fragmented.ME …

about ME & me …

Can you imagine,
every single day of your life,
feeling like this quote by a leading specialist in AIDS & ME/CFS?

“[ME/CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” ~ Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University.

And I am so sorry to write this, but sadly, it is the reality that myself and millions of others live. Feeling like we are dying every single day of our lives and wondering how on earth we are still alive the next day. This illness is like a living death.

The National Institute of Health and Care Excellence (NICE) estimates the prevalence of CFS / ME to be ‘at least’ 0.2% to 0.4% of the UK population, implying up to 1 in 250 people affected, or 260,000 in total.

The CDC estimates that one million people in the US have ME/CFS and as many as 17-24 million people worldwide have ME/CFS. A recent UK biobank study places that estimate at 30 million. In 2015, the Institute of Medicine Report estimated there were between 836,000 and 2.5 million ME/CFS patients in the United States.

 

ME/CFS definitions ...

Below you will find a few, of the very many available, ME/CFS definitions as defined by different bodies and countries. These are taken from their respective websites (as defined in their titles) and are their own copyright.

NHS UK

Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness.

CFS is also known as ME, which stands for myalgic encephalomyelitis. Many people refer to the condition as CFS/ME.

CFS/ME can affect anyone, including children. It's more common in women, and tends to develop between your mid-20s and mid-40s.

NICE

CFS/ME is a long-term illness with a broad range of symptoms. The prominent symptom for most people is feeling extremely tired (fatigue) and generally unwell (malaise) after minimal effort, which can make it hard to do everyday tasks and activities. People with CFS/ME can also have headaches, sleep problems, muscle pain and problems concentrating. The pattern of a person's symptoms, and their severity, can vary from day to day, or even in the same day. Some people have relatively mild symptoms, while others have a serious illness that severely affects their everyday lives and their families. The illness may last a long time.

People with 'mild' CFS/ME are generally able to carry on everyday activities, such as their work or education, or housework, but with difficulty. To achieve this, they may have given up hobbies and social activities and need to rest in their spare time.

People with 'moderate' CFS/ME can't move around easily and have problems continuing normal levels of daily activities. They have usually had to give up their work or education, may need to sleep in the afternoon and rest frequently between activities, and have problems sleeping at night.

People with 'severe' CFS/ME are only able to do very basic daily tasks such as cleaning their teeth, or may need help even with these. They may be housebound or even bedbound most or all of the time and need a wheelchair to get around. They have problems with learning, memory and concentrating, and are usually very sensitive to noise and light. It may take them a long time to recover from an activity involving extra effort, such as leaving the house or talking for too long.

Open Medicine Foundation

Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME / CFS) is a life-altering and complex multi-system disease that can present as an array of different symptoms that may change over time and differ from patient to patient. The most common symptoms of ME/CFS are post-exertional malaise, unrefreshing sleep, profound fatigue, cognitive impairment, orthostatic intolerance, and pain.

The cause of ME/CFS is currently unknown, but a combination of genetic and environmental factors appear to be relevant. There are also no diagnostic tests or CIHR approved treatments available.

Not only do symptoms vary in type but also in severity, ranging from mild to severe. An estimated 1 in 4 patients are housebound or bedbound and many of the most severely affected need to be fed by tube.

Currently, there is no laboratory diagnostic test. Due to a symptom set that overlaps with several other diseases, clinical assessment and symptoms and the exclusion of other diseases are necessary for accurate diagnosis.

The current lack of knowledge about the disease is purely a reflection of the lack of research funding.

Today, the landscape of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) research is growing with the outlook brighter than ever.

Join Open Medicine Foundation’s quest to raise funds for research for effective treatments and diagnostic tests for people affected by ME/CFS.

CDC

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness.

People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have overwhelming fatigue that is not improved by rest. ME/CFS may get worse after any activity, whether it’s physical or mental. This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with sleep, thinking and concentrating, pain, and dizziness. People with ME/CFS may not look ill. However,

  • People with ME/CFS are not able to function the same way they did before they became ill.
  • ME/CFS changes people’s ability to do daily tasks, like taking a shower or preparing a meal.
  • ME/CFS often makes it hard to keep a job, go to school, and take part in family and social life.
  • ME/CFS can last for years and sometimes leads to serious disability.
  • At least one in four ME/CFS patients is bed- or house-bound for long periods during their illness.

Anyone can get ME/CFS. While most common in people between 40 and 60 years old, the illness affects children, adolescents, and adults of all ages. Among adults, women are affected more often than men. Whites are diagnosed more than other races and ethnicities. But many people with ME/CFS have not been diagnosed, especially among minorities.

Symptoms ...

Below you will find a list, of the very many available, ME/CFS definitions as defined by different bodies and countries. These are taken from their respective websites (as defined in their titles) and are their own copyright.

NHS

The main symptom of CFS/ME is feeling extremely tired and generally unwell.

Symptoms vary from person to person, and the severity of symptoms can vary from day to day, or even within a day.

Extreme tiredness (fatigue)

The main symptom of CFS/ME is extreme physical and mental tiredness (fatigue) that doesn't go away with rest or sleep. This can make it difficult to carry out everyday tasks and activities.

Most people with CFS/ME describe their fatigue as overwhelming and a different type of tiredness from what they've experienced before.

Other symptoms of CFS/ME

Other symptoms of CFS/ME include:

  • sleep problems, such as insomnia
  • muscle or joint pain
  • headaches
  • a sore throat or sore glands that aren't swollen
  • problems thinking, remembering or concentrating
  • flu-like symptoms
  • feeling dizzy or sick
  • fast or irregular heartbeats (heart palpitations)

Exercising usually makes the symptoms of CFS/ME worse. Sometimes the effect is delayed and you'll feel very tired a few hours after you've exercised, or even the next day.

Severity of symptoms

Most cases of CFS/ME are mild or moderate, but up to one in four people have severe symptoms. If your symptoms are severe, a specialist should be involved in your treatment.

CFS/ME symptoms can be considered:

  • mild – you're able to carry out everyday activities, such as work, studies or housework, but with difficulty; you may need to give up hobbies or social activities so you can rest in your spare time 
  • moderate – you may have difficulty moving around easily and problems carrying out daily activities; you may not be able to work or continue with your education and may need to rest often; and you may also have problems sleeping at night 
  • severe – you may only be able to do very basic daily tasks, such as brushing your teeth; you may be housebound or even bedbound and may need a wheelchair to get around; and you may also have difficulty concentrating, be sensitive to noise and light, and take a long time to recover after activities involving extra effort, such as leaving the house or talking for long periods

There may be times when your symptoms get worse. These periods are known as setbacks or relapses.

What else could it be?

The symptoms of CFS/ME are similar to those of other conditions, including postural tachycardia syndrome (PoTS), where you have an abnormal increase in heart rate after sitting or standing up, which can cause dizziness, fainting and other symptoms.

If you think you may have CFS/ME, it's important to see your GP to make sure you get a correct diagnosis.

Open Medicine Foundation

ME/CFS is a multi-system disease in which patients experience immune, endocrine, neurological, digestive, and musculoskeletal symptoms. There are over 60 symptoms reported by people with ME/CFS. The common symptoms are listed below but not limited to what may define an individual experience.

Most Common Symptoms
  • Post-exertional malaise (symptoms worsen after exertion)
  • Persistent fatigue
  • Sleep disturbances
  • Pain (muscle pain, headaches)
Neurological | Cognitive Symptoms
  • Brain Fog
  • Confusion and Disorientation
  • Difficulty concentrating
  • Short-term memory issues
  • Ataxia and muscle weakness
  • Hypersensitivity to noise and light
Autonomic | Immune | Digestive Symptoms
  • Orthostatic intolerance
  • Postural Orthostatic Tachycardia Syndrome (POTS)
  • Recurrent flu-like symptoms
  • Sweating / Fever
  • Nausea & IBS
  • New sensitivities to food, medication, chemicals
  • Sore throat
  • Tender lymph nodes
  • Light-headedness
  • Change in body weight
  • Temperature instability
  • Change in appetite

Diagnosis ...

Below you will find a list, of the very many available, ME/CFS diagnostic measures as defined by different bodies and countries. These are taken from their respective websites (as defined in their titles) and are their own copyright.

NHS

There's no test for chronic fatigue syndrome (CFS), but there are clear guidelines to help doctors diagnose the condition.

Your GP should ask you about your medical history and give you a physical examination.

They may also offer you tests like blood tests or urine tests to rule out other conditions, such as anaemia (lack of red blood cells), an underactive thyroid gland, or liver and kidney problems.

It can take a while for CFS/ME to be diagnosed because other conditions with similar symptoms need to be ruled out first. 

In the meantime, you may be given some advice about managing your symptoms.

Read more about lifestyle advice for CFS/ME

Guidelines for diagnosing CFS/ME

Guidelines from the National Institute for Health and Care Excellence (NICE) say doctors should consider diagnosing CFS/ME if a patient has extreme tiredness that can't be explained by other causes and the tiredness:

  • started recently, has lasted a long time, or keeps coming back
  • means you can't do the things you used to do
  • gets worse after activity or gentle exercise, such as a short walk

You must also have some of these symptoms:

  • problems sleeping, such as insomnia
  • muscle or joint pain
  • headaches
  • a sore throat or sore glands that aren't swollen
  • problems thinking, remembering or concentrating 
  • flu-like symptoms
  • feeling dizzy or sick 
  • fast or irregular heartbeats (heart palpitations)
  • doing exercise or concentrating makes your symptoms worse

Your GP should consult a specialist if they're unsure about the diagnosis or if you have severe symptoms.

If a child or young person under 18 has symptoms of possible CFS/ME, they should be referred to a paediatrician within six weeks of first seeing their doctor about their symptoms.

As the symptoms of CFS/ME are similar to those of many common illnesses that usually get better on their own, a diagnosis of CFS/ME may be considered if you don't get better as quickly as expected.

The diagnosis should be confirmed by a doctor after other conditions have been ruled out, and if your symptoms have lasted at least:

  • four months in an adult
  • three months in a child or young person

NICE

Investigating the symptoms

There is no test to diagnose CFS/ME – doctors diagnose CFS/ME based on your symptoms.

The symptoms of CFS/ME are similar to the symptoms of some other illnesses, and to find out what is wrong (make a diagnosis), your doctor will need to do some tests. There is no specific test that can identify CFS/ME, so the diagnosis has to be based on ruling out other conditions that could be causing your symptoms.

Your doctor should consider CFS/ME if you have disabling tiredness (fatigue) that is new or started suddenly, lasts a long time or keeps coming back and cannot be explained by other causes. CFS/ME should be considered if the fatigue means you can't do the things you used to, if it gets worse after activity or gentle exercise such as a short walk, and if you also have some of the following symptoms:

  • sleep problems
  • pain in the muscles or joints
  • headaches
  • sore throat or sore glands that aren't swollen
  • problems thinking, remembering, concentrating or planning
  • flu-like symptoms
  • feeling dizzy or sick or having palpitations (irregular or fast heartbeats), or
  • exercising or concentrating on something makes your symptoms worse.

Your doctor should consult a specialist if they are unsure about the diagnosis, or if you have severe symptoms.

Because CFS/ME has symptoms similar to many common illnesses that get better on their own, doctors should consider whether a person has CFS/ME if they do not get better as quickly as expected. On the other hand, some other serious illnesses may also have the same symptoms as CFS/ME. So your doctor should take special care to rule these out, particularly if you have any of the following:

  • symptoms such as double vision or blackouts that suggest a problem with your nervous system
  • painful, swollen joints
  • chest or heart problems
  • weight loss
  • signs of stopping breathing for short periods while asleep (called sleep apnoea)
  • persistently swollen glands.

Before making a diagnosis of CFS/ME your doctor should ask you questions about your medical history, do a thorough physical examination, and assess your mental health. They should carry out tests to rule out other causes of your symptoms. These will depend on your symptoms but will include urine and blood tests. Your doctor should consult a specialist if they are unsure about the diagnosis, or if you have severe symptoms.

While you are waiting for a diagnosis or a referral, you should be given advice and help to deal with (or manage) your symptoms so that your everyday life and activities are affected as little as possible.

If a child or young person under 18 years old has symptoms of possible CFS/ME they should be referred to a paediatrician (a specialist children's doctor) within 6 weeks of first seeing their doctor about the symptoms.

If you have new and/or distressing symptoms at any time, you should talk to your doctor about them.

Questions to Ask
  • What are the tests you are offering and why am I having them?
  • What do these tests involve? Please give me details.
  • Where will these tests be carried out? Can I have them at home?
  • How long will I have to wait until I have the tests?
  • How long will it take to get the results, and how will I be told about them?
Reaching a diagnosis of CFS/ME

Your doctor should diagnose CFS/ME if your symptoms can not be explained by another cause and have lasted for:

  • 4 months in an adult
  • 3 months in a child or young person (the diagnosis should be made in consultation with a paediatrician).

Your doctor should reassure you that most people's condition improves with time, and many people recover and are able to go back to work and do their normal activities. But you also need to know that some people's symptoms do not improve. For children, the outlook is generally better than for adults.

Treatments ...

Below you will find a list, of the very many available, ME/CFS treatments used as defined by different bodies and countries. These are taken from their respective websites (as defined in their titles) and are their own copyright.

Treatments for ME are extremely controversial ...

CDC

There is no cure or approved treatment for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). However, some symptoms can be treated or managed. Treating these symptoms might provide relief for some patients with ME/CFS but not others. Other strategies, like learning new ways to manage activity, can also be helpful.

Patients, their families, and healthcare providers need to work together to decide which symptom causes the most problems. This should be treated first. Patients, families, and healthcare providers should discuss the possible benefits and harms of any treatment plans, including medicines and other therapies.

Healthcare providers need to support their patients’ families as they come to understand how to live with this illness. Providers and families should remember that this process might be hard on people with ME/CFS.

Symptoms that healthcare providers might try to address are:

Post-exertional Malaise (PEM)

Post-exertional malaise (PEM) is the worsening of symptoms after even minor physical, mental or emotional exertion. For some patients, sensory overload (light and sound) can induce PEM. The symptoms typically get worse 12 to 48 hours after the activity or exposure and can last for days or even weeks.

PEM can be addressed by activity management, also called pacing. The goal of pacing is to learn to balance rest and activity to avoid PEM flare-ups, which can be caused by exertion that patients with ME/CFS cannot tolerate. To do this, patients need to find their individual limits for mental and physical activity. Then they need to plan activity and rest to stay within these limits. Some patients and doctors refer to staying within these limits as staying within the “energy envelope.” The limits may be different for each patient. Keeping activity and symptom diaries may help patients find their personal limits, especially early on in the illness.

Being mindful of personal limits could prove to be a helpful coping skill for people living with ME/CFS.  This enables them the ability to find balance between activities and rest, giving them a sense of managing the illness rather than the illness controlling them. People living with ME/CFS may find that everyday activities such as buying groceries, brushing their teeth, or interacting with others may be enough to cause a relapse or “crash”. It may not be possible to entirely avoid these situations, but people living with ME/CFS need to be aware of monitoring their own activity limits. When having a good day, it is tempting to try and “push” (increasing activity beyond what would normally attempt) to make up for lost time. However, this can then lead to a “crash” (worsening of ME/CFS symptoms); the cycle can then repeat itself after people start recovering from the crash.

Rehabilitation specialists or exercise physiologists who understand ME/CFS may help patients with adjusting to life with ME/CFS. Finding ways to make activities easier may be helpful, like sitting while doing the laundry or showering, taking frequent breaks, and dividing large tasks into smaller steps. Some patients find heart rate monitors useful in keeping track of how hard their body is working, as a way to prevent PEM. Patients who have learned to listen to their bodies might be able to increase their activity level. However, ME/CFS is unpredictable. PEM symptoms may not start right after exercise, making it important for each treatment plan to be tailored for each case. Exercise is not a cure for ME/CFS.

Any activity or exercise plan for people with ME/CFS needs to be carefully designed with input from each patient. While vigorous aerobic exercise can be beneficial for many chronic illnesses, patients with ME/CFS do not tolerate such exercise routines. Standard exercise recommendations for healthy people can be harmful for patients with ME/CFS. However, it is important that patients with ME/CFS undertake activities that they can tolerate, as described above.

Sleep

Patients with ME/CFS often feel less refreshed and restored after sleep than they did before they became ill. Common sleep complaints include difficulty falling or staying asleep, extreme sleepiness, intense and vivid dreaming, restless legs, and nighttime muscle spasms.
Good sleep habits are important for all people, including those with ME/CFS. When people try these tips but are still unable to sleep, their doctor might recommend taking medicine to help with sleep. First, people should try over-the-counter sleep products. If this does not help, doctors can offer a prescription sleep medicine, starting at the smallest dose and using for the shortest possible time.

People might continue to feel unrefreshed even after the medications help them to get a full night of sleep.If so, they should consider seeing a sleep specialist. Most people with sleep disorders, like sleep apnea (symptoms include brief pausing in breathing during sleep) and narcolepsy (symptoms include excessive daytime sleepiness), respond to therapy. However, for people with ME/CFS, not all symptoms may go away.

Pain

People with ME/CFS often have deep pain in their muscles and joints. They might also have headaches (typically pressure-like) and soreness of their skin when touched.

Patients should always talk to their healthcare provider before trying any medication. Doctors may first recommend trying over-the-counter pain-relievers, like acetaminophen, aspirin, or ibuprofen. If these do not provide enough pain relief, patients may need to see a pain specialist. People with chronic pain, including those with ME/CFS, can benefit from counseling to learn new ways to deal with pain.

Other pain management methods include stretching and movement therapies, gentle massage, heat, toning exercises, and water therapy for healing. Acupuncture, when done by a licensed practitioner, might help with pain for some patients.

Depression, Stress, and Anxiety

Adjusting to a chronic, debilitating illness sometimes leads to other problems, including depression, stress, and anxiety. Many patients with ME/CFS develop depression during their illness. When present, depression or anxiety should be treated. Although treating depression or anxiety can be helpful, it is not a cure for ME/CFS.

Some people with ME/CFS might benefit from antidepressants and anti-anxiety medications. However, doctors should use caution in prescribing these medications. Some drugs used to treat depression have other effects that might worsen other ME/CFS symptoms and cause side effects. When healthcare providers are concerned about patient’s psychological condition, they may recommend seeing a mental health professional.

Some people with ME/CFS might benefit from trying techniques like deep breathing and muscle relaxation, massage, and movement therapies (such as stretching, yoga, and tai chi). These can reduce stress and anxiety, and promote a sense of well-being.

Dizziness and Lightheadedness (Orthostatic Intolerance)

Some people with ME/CFS might also have symptoms of orthostatic intolerance that are triggered when-or made worse by-standing or sitting upright. These symptoms can include:

  • Frequent dizziness and lightheadedness
  • Changes in vision (blurred vision, seeing white or black spots)
  • Weakness
  • Feeling like your heart is beating too fast or too hard, fluttering, or skipping a beat

For patients with these symptoms, their doctor will check their heart rate and blood pressure, and may recommend they see a specialist, like a cardiologist or neurologist.

For people with ME/CFS who do not have heart or blood vessel disease, doctor might suggest patients increase daily fluid and salt intake and use support stockings. If symptoms do not improve, prescription medication can be considered.

Memory and Concentration Problems

Memory aids, like organizers and calendars, can help with memory problems. For people with ME/CFS who have concentration problems, some doctors have prescribed stimulant medications, like those typically used to treat Attention-Deficit / Hyperactivity Disorder (ADHD). While stimulants might help improve concentration for some patients with ME/CFS, they might lead to the ‘push-and-crash’ cycle and worsen symptoms. “Push-and-crash” cycles are when someone with ME/CFS is having a good day and tries to push to do more than they would normally attempt (do too much, crash, rest, start to feel a little better, do too much once again).

Living with ME/CFS

Strategies that do not involve use of medications and might be helpful to some patients are:

  • Professional counseling: Talking with a therapist to help find strategies to cope with the illness and its impact on daily life and relationships.
  • Balanced diet. A balanced diet is important for everyone’s good health and would benefit a person with or without any chronic illness.
  • Nutritional supplements. Doctors might run tests to see if patients lack any important nutrients and might suggest supplements to try. Doctors and patients should talk about any risks and benefits of supplements, and consider any possible interactions that may occur with prescription medications. Follow-up tests to see if nutrient levels improve can help with treatment planning.
  • Complementary therapies. Therapies, like meditation, gentle massage, deep breathing, or relaxation therapy, might be helpful.

Important note: Patients should talk with their doctors about all potential therapies because many treatments that are promoted as cures for ME/CFS are unproven, often costly, and could be dangerous.

Disclaimer: This website is for informational purposes only. The information provided on this website is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

NICE Guidelines (ME/CFS) ...

Below you will find links to the new draft and the actual NICE guidelines for ME/CFS. These are taken from their respective websites (as defined in their titles) and are their own copyright.

NICE draft guidelines for ME/CFS ...

NICE actual guidelines for ME/CFS ...

We have also decided to breakdown these guidelines and highlight and simplify the important bits for you.

Please, go to the ‘NICE guidelines (ME/CFS) ...’ page.

Related Illnesses ...

Below you will find a list, of the very many available, ME/CFS associated illnesses as defined by different bodies and countries. These are taken from their respective websites (as defined in their titles) and are their own copyright.

  • Headaches (either new or worsening)
  • Migraine (either new or worsening)
  • Chronic Pain (without any other reason)
  • Fibromyalgia
  • Allergies / Intolerances (either new or worsening)

Other illnesses of ME/CFS include:

ME/CFS Patient Experience ...

Can you imagine,
every single day of your life,
feeling like this quote by a leading specialist in AIDS & ME/CFS?

“[ME/CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” ~ Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University.

And I am so sorry to write that, sadly, this is the reality that myself and millions of others live. Feeling like we are dying every single day of our lives and wondering how on earth we are still alive the next day. This illness is like a living death.

The National Institute of Health and Care Excellence (NICE) estimates the prevalence of CFS / ME to be 'at least' 0.2% to 0.4% of the UK population, implying up to 1 in 250 people affected, or 260,000 in total.

The CDC estimates that one million people in the US have ME/CFS and as many as 17-24 million people worldwide have ME/CFS. A recent UK biobank study places that estimate at 30 million. In 2015, the Institute of Medicine Report estimated there were between 836,000 and 2.5 million ME/CFS patients in the United States.

My Story ...

In my case, I was 22 years of age, four months pregnant, and in hospital with doctors and nurses unable to find out what exactly was wrong with me, except liver issues that were seemingly unrelated to anything they had tested for.

I eventually found out that I’d had glandular fever, also known as mononucleosis, which is caused by the infamous Epstein-Barr Virus and is implicated in many ME/CFS cases. And so, this is how my very long story began.

What is Wrong?

For months before ending up in hospital I’d been suffering with sickness (yes I was pregnant but I was also sure this was not normal sickness), weakness, headaches and lots of other ailments.

‘It’s just pregnancy’ said the midwife, ‘you’ll start to feel much better towards the middle trimester’.

‘Maybe you’re not good at being pregnant’, said my mum.

‘Maybe you’re getting over your breakup with baby’s father, and you are just heartbroken’ said my friend.

Whatever it was I didn’t expect to feel like I was dying everyday, especially not over a year after I’d first gotten sick. I wanted to feel good because I was having a beautiful baby. Something I’d longed for. But I was constantly plagued with severe and violent migraines. I had skin issues, later diagnosed as lichen planus. I had dizziness and vertigo with flickering eyes that caused me so much stress. And everything that was going round, I got it, and hung on to it for months. It was never ending.

I went from being told it was nothing, maybe it’s just stress.

Your results are normal ...

You results are abnormal ...

But we don’t know what’s wrong ...

I heard these responses so many times and over so many years.

Then in 2001 my health really took a bad turn and I couldn’t get up or down the stairs. It was at this time that, I was finally diagnosed with ME / CFS (mild).

MORE to follow ...

Please see ‘my illness timeline ...’ below for a more detailed breakdown ...

 

PRE 1984 (pre illness) ...

I was always relatively healthy, except for migraine, which started when I was 11 or 12 and came either if I was sick with a virus or something else, and when I was tired or due to get my period, oh and really not liking the sun because that too gave me migraines. But apart from those reasons, which are clearly linked to having a migrainous brain, I didn’t get any sicker than your normal young and healthy person.

During my school years, I was extremely active, I’d played for the school rounders & netball teams, as well as ran in competitions for the school, and I continued this level of activity when I left school too.

After leaving school I did lots of travelling. I lived and worked in many parts of UK, The Isle of Man, France, and along the Mediterranean coast line cities and towns. And I only ever got sick once with a bad case of tonsillitis (while working in the Isle of Man).

 

1
0

1984 - 1985 (getting sick & pregnant) ...

So when I did start to get sick, sometime in mid to late 1984, with the most horrific migraines and other symptoms (see below), it was understandably alarming and worrying.

I thought I had a brain tumour.

I thought I had cancer.

I was sure I was seriously ill.

The symptoms were too severe to be nothing.

I was worried and scared.

My go to thoughts were, could I maybe have HIV/AIDS?

My initial symptoms were:

  • more frequent and more severe migraines
  • an inability to cope with scents, chemicals and smells, which now always triggered a migraine
  • continual swollen glands & enlarge lymph nodes under my arms
  • sore throats every single day
  • always feeling like I was coming down with a bad case of the flu
  • extreme nausea
  • attacks of vertigo and repeated nystagmus
  • anxiety
  • phobias
  • OCD
  • severe side effects from things previously tolerated, especially alcohol (I haven’t touched alcohol since this time)

Whilst initially experiencing all these symptoms one of the many doctors I saw, at one of my many visits to A&E or emergency GP call outs, suggested I get a pregnancy test. And so I did and ...

It was positive. I was pregnant.

I was ecstatically over the moon. I was elated.

Pregnancy

I hadn’t been aware that I was pregnant. I hadn’t missed a period. And to feel so shockingly unwell during my first pregnancy was quite alarming. And to also be told the symptoms that I was experiencing were just pregnancy symptoms really concerned me because I’d planned to have lots of children and I knew for sure that I couldn’t do this again, especially whilst looking after my first child.

That said, I wasn’t convinced. My body was telling me something else. I felt like I knew that I was very sick. But, this information from my medical team made me feel that maybe I wasn’t sick after all, I was simply pregnant. I’d never been pregnant before and I’d never been this sick before. So really, I didn’t know., maybe this was purely pregnancy symptoms.

And so, what should have been a wonderful time, became, instead, one of the most sickest and unsettling periods of my life.

This ‘doubting’, what my body knew deep into its soul, set off patterns of self-doubt and self-questioning, as well as a very unhealthy doctor / patient dynamic. Both would continue to damage me for years.

Furthermore, and sadly, early pregnancy didn’t run smoothly by any means.

I was bleeding heavily for the first 3-4 months and at around 6-8 weeks I was told I was loosing my baby.

I was miscarrying ...

And finally at around 8-10 weeks I was told by the maternity specialist at St Mary’s in Manchester that I’d lost my baby. They added that it wasn’t a complete miscarriage and so I’d need a medical procedure to ensure nothing was left behind. This would also ensure that I didn’t get septicaemia and give me the best chance of getting pregnant again. When I refused to accept this information and have the D&C procedure there and then, they reluctantly allowed me to go home and take two weeks ‘breathing space’ in order to accept the so-called inevitable and to then come back, in two weeks, ready to stay in and be operated on.

During the whole of this heartbreaking two weeks my body behaved like I was miscarrying. Yet, deep inside I still felt pregnant.

Two weeks later, prior to the planned operation, when I had a scan to confirm to me that the baby was dead, something astounding was gifted to everyone present that day. The room had filled with an overwhelming and deafening silence as we all tried to figure out what the unexpected echo of the sonogram was actually telling us.

The truth quickly dawned ... my baby, my firstborn son, had a heart beat that echoed so loud it was shouting out my belief in something higher than me and preparing me to have distrust in the whole medical profession for the rest of my life.

The atmosphere from that moment in time has stayed forever in my memory. And so I was proved right and they’d been so very wrong. And more importantly, all was well with my baby.

My baby was very much alive ...

From then on, even though my symptoms continued, most of them were blamed on pregnancy. Until, at around 18-20 weeks, my eyes went yellow and I couldn’t stop vomiting and had other symptoms of a serious liver issue.

Due to this episode I was rushed to hospital and ended up spending a few months in there with what turned out to be glandular fever. Unconfirmed at the time because they had no idea what was wrong with me. They were asking the wrong questions and looking in the wrong places for the answers. Another pattern that would continue to confuse any diagnosis, or much needed help, I could have gotten.

 

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1985 (first child born) ...

On the 6th of May 1985, one day after my 23rd birthday, I gave birth to a beautiful healthy boy (boy_1).

After giving birth to boy_1 I stayed in hospital for five days and then went home to my mum and dads house. I stayed there for the first six months of boy_1’s life. Firstly, because my flat wasn’t ready, and secondly, because I didn’t feel well enough or strong enough to care for him alone.

During this time, I still had all the symptoms I’d previously had and now I was so weak that I was unable to stand or hold my baby. I felt really worried about his safety. On top of this, I was breastfeeding and developed mastitis, a breast abscess, and had to stop breastfeeding because we couldn’t get control of the infection. Long term, this left me with a very a large troublesome cyst.

During the six months of living with my parents, we called the emergency doctor, the midwife, and lots of other medical professionals, many times. My symptoms were worrying and weird at times. You couldn’t possibly feel the way I felt and not be afraid they were missing something and you were in fact seriously ill and dying. And the only help I was ever offered came from an emergency GP who told my dad:

give her this Valium, she’s just stressed ...

Obviously, I didn’t take the Valium, nor did I visit the GP much in person unless something new and worrying came up. That said, my symptoms did continue to varying degrees depending on how tired I was.

After six months living with my parents’s support I reluctantly moved into my own place, just me and boy_1 ...

 

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1985 - 1990 (single parent years) ...

1985 ...

Gave birth to boy_1 (see above) ...

My Health

I spent most of my first year, as a sick single parent, having test after test, with a notable lack of further investigations, and nothing much conclusive ever coming from any of them. Consistently the replies I got were:

your tests are normal ...

what do you expect when you're a single parent and trying to blah blah blah ...

don't worry so much ...

don't expect so much from yourself ...

you're doing great ...

Deep inside I could feel I was getting sicker and sicker by the month. Knowing you are getting sicker, but having no positive investigative results to show this, can be confusing and controversial. Sentiments that most chronically sick people with ME/CFS will no doubt identify with. Yet, because I'd been told it was the stress of being a single parent I continued to try to ignore the warning symptoms as much as I could so as not to keep bothering the doctors with my many health worries. That said, I definitely still made more GP visits and call-outs than the general 'well' public did! My now very large medical file will contest to this.

1986 ...

My Health

Being a sick single parent was increasingly hard. I was often at the doctors, and even consistently called the emergency doctor out. But most consultations with medical professionals concluded with the doctor repeatedly reiterating ...

I am pleased to inform you, all your tests are 'relatively' normal ...

In this year, 1986, I did, however, finally receive a diagnosis of a skin condition called Lichen Planus, which had developed during pregnancy and was now finally diagnosed.

1987 ...

My Health

This is the year I questioned if I was maybe getting depressed. I was anxious most of the time and lost weight drastically. I was having severe panic attacks, I developed OCD and a phobia that, at the time, I daren't even discuss with anyone ...

1988 ...

My Health

I was definitely depressed. Still very anxious. But I developed some skills that I could use to deal with the anxiety; and so not all my anxiety was turning into panic attacks. My OCD was wild and running the show. The phobia was huge and still very much a secret ...

1989 ...

This year saw boy_1 go to nursery.

My Health

Starting nursery was something we had both looked forward to and something that, at the time, I thought might help my health improve. Instead I continued to get worse. Having to consistently do something over and over, for instance like getting boy_1 to nursery on time, was making me sicker and taking away much of my ability to carry on for the rest of that day. Every single weekend was spent, in our PJs, with me resting and trying to recover enough in order to start the week again. We called these weekends 'treats'. How else would I inculcate PJ days and lots of doing nothing into healthy boy_1's life.

school holidays were a blessing ...

Boy_1 was a beautiful boy and, I am sure, he was very aware of just how sick I was because he behaved so well. I even taught him some very firm, and grownup for his age, rules regarding what he could and couldn't do when I had a migraine and I had to be alone in the dark bedroom in order to recover.

and he obeyed them to the letter ...

I was now realising that I could not consistently do anything without a few days recovery in-between, at the very least 1 or 2 days recovery time. 

1990 ...

This year boy_1 started school.

My Health

In the UK, the school year starts September, but ultimately, I ended the year in great struggle and denial. Because for some reason, probably trying to appear normal and because it was expected, I got myself a part-time job at the school where my son went.

Working part-time, and for only part of the year, was simply too much for me. But, it became another pattern I would continue to live my life by ...

getting part-time jobs, for part of the year, and then when I got too sick to work just leaving them until I felt able to join the  cycle of pretence again ...

All of this, just to feel like I was living some semblance or normality.

My symptoms were very much the same as at the start of my illness, in 1984, but now I was getting good at ignoring them and getting good at living the pattern of working part-time for part of the year and spending the rest of my time doing nothing but rest and recovery.

deep inside I knew that I was still getting slightly sicker with every month of living this way ...

 

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1990 - 1995 (single parent years) ...

1990 ...

My dad bought me a car this year because I could no longer walk everywhere, like I used to, and the smells and fumes on the buses were making me so poorly that I'd be in bed for days on end with never ending migraines. This would result in boy_1 would missing school because I was just too poorly to get up and get him there.

My Health

The symptoms that I had experienced initially with the illness were never ending and ever interfering with my plans, but the depression, anxiety, OCB and phobias were now interfering so much so that I had to seek help on several occasions. The GP offered me medicines for depression and anxiety so many times, but the OCD and phobia were stopping me from taking these medicines (anyone who knows me well knows the reasons behind this, I just don't want to share here), and accepting their help in order to maybe feel better long-term.

1991 ...

My Health

This year I finally accepted treatment for the depression and anxiety. The medication I was given was twofold and worked well both for the depression and for the anxiety but not for the OCD and phobia, which were still kept secret from the GP. I continued to secretly suffer greatly with these, but they were impacting massively on my normality and everyday life. I am still reluctant to document their details on such an open space and so I will continue to refer to them as the OCD & Phobia, which might now, in 1991, be a few phobias in reality.

1992 ...

Despite being so unwell, and trying to work part-time, I now started college to redo my English GCSE, and start a psychology GCSE and a Sociology GCSE. 

My Health

By the close of this year, taking treatment for depression had made me realise that I had been slightly depressed. Who wouldn't be with such a dreadful undiagnosed and often unbelieved illness. But now the depression and anxiety was lifting I was very much aware how physically sick I had been in the beginning and unwell I still was. And so, instead of the symptoms improving, like I'd been told they would, these symptoms were progressing like wild fire. This leads me to now conclude that it was the initial illness and its symptoms that caused the depression and anxiety. And now these were lifting I was still left with the bloody awful, ever growing, symptoms of the still undiagnosed illness.

By way of a recap, I was now suffering with:

  • more frequent and more severe migraines
  • horrific eye pain
  • jaw & face pain
  • an inability to cope with scents, chemicals and smells, which now always triggered a migraine
  • continual swollen glands & enlarge lymph nodes under my arms
  • sore throats every single day
  • always feeling like I was coming down with a bad case of the flu
  • extreme nausea
  • attacks of vertigo and repeated nystagmus
  • anxiety
  • phobias
  • OCD
  • severe side effects from things previously tolerated, especially alcohol (I haven’t touched alcohol since this time)

One very notable 'new' thing I developed, in this year, was horrific pain in both my eyes that felt like someone trying to twist the eyeballs out. When it comes now, it can lasts for months at a time, and the pain radiates up to my head, down my neck, into my face, and is bloody unbearable. On the very first day that I woke up with this, I visited the GP three times in that one day. I had a brain scan, some drops in my eyes that made me feel terrible (if you've had them then you'll know), and lots of other tests, all on that very first day of symptoms. The day concluded with the neurologist telling me ...

sorry, but you’ll be pleased to know, we can't find any reason for this ...

it must just be a different kind of migraine ...

FFS ... My life in a nutshell ...

it's because you're a single parent

it's because you're stressed / depressed / working too hard / doing too much ...

it's a different kind of migraine

And so it continued ... I now have typical migraine, ocular migraine, cluster headaches, and sometimes I get a combination or all three together. NIGHTMARE ...

1993 ...

I passed my GCSE's with A for English, A* for psychology and A for sociology. I also started A-Level psychology and a counselling diploma in September of this year too.

My Health

My health was still appalling but I was now achieving things in my life by keeping to a very delicate and finely tuned schedule. We went to the theatre once a month. I'd stopped working part-time. Weekends were still mainly PJ time. And during the day I did my courses. But the counselling course would now need boy_1 to come home on his own and be alone for 15 minutes. He was only 9 years of age, and I had no other support. I really battled with this, because I wanted so much to do this diploma, but because my anxiety came back full on I decided the only way to combat it was to leave the counselling class earlier so I could get him from school, as I always had, and be home with him.

I was good at compromising, I'd been doing it now for almost 10 years because of having to work within my physical limits due to the illness meant I knew how to compromise, and not give up, with things I wanted a lot ...

1994 ...

My Health

Plodding along and now very sure I had this new illness, ME, that I had recently read about; jokingly know by many as 'yuppie flu' and often disbelieved by the medical profession. I found I could kind of control the severity of my symptoms by doing less and by managing what I did with periods of rest and recovery in-between. In reality though, I wasn't managing it at all very well.

I was always spending more energy than I actually had ... living in deficit ...

just like I did with money ... living in debt ...

1995 ...

Got married (see below) ...

My Health

My symptoms were worse than they had ever been. I was now 33 years of age and still chronically sick without a diagnosis. And sadly, by now I had struggled on for over ten years, working part-time for part of the year and leaving when I got too sick to work. I was also juggling trying to get a better education, to ensure future job prospects, for when my son was at high school and I would have to work.

I was just desperately trying so to have some kind of a life ...

And still I had no idea what was really wrong with me. No diagnosis also meant no disability benefits, which I could seriously use at this time. Because as well as being chronically sick I was also chronically poor.

by this time I'd heard of ME/CFS and I wondered if I had it too ...

 

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1995 (got married) ...

I got married on 12.10.1995.

Although I was still poorly and unable to live a so-called 'normal' life, I got married in October of this year. You may wonder how we met, because I didn’t go out and I wasn’t living the kind of life where you would meet someone really. But I had started to study the Bible and I met him at one of the meetings I attended in relation to this. He had been previously married, but was now divorced. From the start, my husband to be, knew I was sick and was very aware that I caught and hung on to every virus and contagious illness going round, which mean we would be living our married life accordingly. Something he didn't seem to mind, as he was busy making money and growing his wealth and I was busy with our blended family and trying to get well. Our marriage has always been based on give and take from both sides.

Please note, that being able to get married was only a possibly because of having 'mild' ME/CFS at the time, which was what made the difference. I know for sure I couldn't have married, or even met, someone in the state I am today as I write this (February 2021).

The Wedding

We didn't have a big wedding, just him, me, my boy_1, his dad and step mum, my dad and mum, were the only people who came to the wedding and we all went for a quiet meal at a local restaurant afterwards. The next day he went back to work and I carried on as normal, except for travelling a little further to take boy_1 to school.

we didn't even go on a honeymoon ...

But, like I said before, this suit us both, all we both wanted was someone to share our lives with, someone who be honour the marriage vows and be loyal and supportive ...

our marriage is based on give and take both ways, and we both have limitations and issues ...

mine being my lack of health ...

his being his need to grow and work ...

My Health

During the first year of our marriage my health wasn't too bad. Probably the 'honey moon' period along with all the adrenaline I triggered daily to continue to pretend to be as normal as I could. But this way of living soon asked for 'payback' and my health plummeted big time. And as usual, it was the migraines that showed my state of health first, as they increased in both pain and symptom levels as well as frequency. I was having them weekly now, they were sometimes lasting a couple of days, and impacting everything we did.

 

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1996 - 1997 (getting sicker & pregnant) ...

After our first year of relatively easy married life, the reality kicked in. Either my symptoms got worse or the 'honey moon' chemicals and the adrenaline I'd been managing to trigger were wearing off and I was struggling, more than ever. My biggest struggle was with pain and exhaustion. However, I could often override, or at the very least ride, the exhaustion with adrenaline but the pain was something else. I didn't like to take pain medications and so I tried to ride the migraines and extra pain alone. I'd developed these double whammy migraines where, if my eye pain was migraine, I would feel like I had two migraines at once; my old kind on top of my head, with severe vomiting, and the new kind in my eyes, lasting for months at a time). On top of this I developed a very painful area in my right upper back in the thoracic muscle. This would hurt so much, then go into spasm like cramp and make me want to fall down. But on direct touch of the skin, like in massage, a large area had altered sensation to it, it was semi-numb but extremely sensitive and painful if the tip of my husband's nail touched it. I also started with severe pain in the left side of my jaw, radiating along the full bottom and top jar and teeth area of the left said of my jawline.

this new face pain, and altered sensation in my upper back, made me again question if I had cancer ...

You surely cannot feel this much pain and it not be serious.

Worse still, I didn't have a diagnosis of anything other than migraine.

Pregnancy

It was a little easier on my body, to be pregnant, this time. I didn't have as many headaches, the lichen planus reoccured but on my legs and in my mouth this time. All the OCD and phobias were also gone. So fortunately for me, the pregnancy overall was definitely easier than the first one, I just needed to take it easy and listen to my body signals. And within four hours of giving birth to boy_2 I was glad to be home again, in my own bed, with my husband, boy_1, and our lovely family life. That said, I'm not sure if things could have carried on had I needed to stay in hospital after this birth.

My Health

The day after the birth I resumed my normal role. Because of extremely tiredness, I started to take my boy_1 to school in my PJs and at the weekends and school holidays he started to spend more and more time with his father in Sheffield.

Although my main health symptoms were pain and migraine I still felt like there was an underlying illness causing these symptoms, an illness linked with my energy levels and my ability to 'do' as much as I'd always done previously.

the former girl I used to be, the girl of pre 1985 was now a very distant sad memory of my past. ...

Life was now very different too ...

 

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1997 (second child born) ...

On the 23rd June 1997, almost two months after my 36th birthday, I gave birth to a beautiful healthy boy (boy_2).

Within four hours of giving birth to boy_2 I was glad to be home again, in my own bed, with my husband, boy_1, and our lovely family life. That said, I'm not sure if things could have carried on had I needed to stay in hospital after this birth. The day after the birth of boy_2 I resumed my normal role in the family. And from the get go taking care of this child was much harder for me, things were wo difficult, but I really felt I didn't have a choice.

I had to play my part in keeping things running smoothly ...

Because of extremely tiredness, I started to take my boy_1 to school in my PJs and at the weekends and school holidays he started to spend more and more time with his father in Sheffield. I'm 100% convinced he was feeling very pushed aside and neglected. As well as being sicker and having a family to take care of, boy_1 must have felt almost invisible due to boy_2 being very attached and needy and ‘no one else’ would ‘do’ for him. I was his world.

To give you an idea of how this played out. One day an elderly friend of mine had to hold him while I took care of something. He could see me and almost touch me but he cried so hard that he had a nose bleed. The minute I took him he calmed down and eventually stopped sobbing. This was our relationship through each growth stage. I was the only person who he could connect with and respond to.

My Health

On top of my ever growing symptoms and ailments, I now developed altered sensation in my upper back, which caused excruciating pain and meant that just cooking and ironing, or doing anything where I had to lean forward slightly, would send it into flare up or cause a whole thoracic muscle spasm. Initially it was thought I’d damaged it during labour. However, this was eventually diagnoses as fibromyalgia.

My migraines were more frequent and more severe. Typically my migraines were either on top of my head or in my left or right eye. But, on some migraine days I was getting what felt like double migraines. Where I’d have the top of my head kind coupled with a migraine in both eyes. I’ve no idea how I learned to look after a new baby, and my other children, with these horrific new kind of migraines, but I did manage, and we got by all relatively unscathed. When I get them now (writing this in early 2021) I have to stay in bed all day, in the dark, with copious ice packs, all the pain medications I can safely take, with the sickie bucket. Yet, when I had my children to care for and somehow I found the inner strength to do this and keep us all safe. I’d like to add here that my husband has never taken a single day off to relieve me of my mother duties or to take care of me while I’ve been sick.

what a super wonder mum I was ... even though I didn’t realise it at the time ...

Other factors included I was older, I had a new baby and a teenager, every other weekend my husband’s three girls, from his previous marriage, were coming to stay for 3-5 days and nights, with me acting as their main carer. I was cooking proper family meals, doing all the housework, shopping and taking care of everyone but myself.

I was as utterly exhausted as you can get without breaking down and I didn’t have anything left for me. I would sometimes take the kids to school in my PJs or wearing clothes over my PJs to save energy.

I was simply exhausted and extremely sad, it seemed like everyone wanted something from me. And it felt like no one was giving anything back to me.

 

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1995 - 2000 (married years) ...

1995 ...

I got married (see above) ...

1996 ...

I was getting sicker & pregnant (see above) ...

In February of this year my dad died. He was only 54 years old, too young to leave us. My dad was the best dad you could ever wish for and I miss him so dearly ... I need to mention him here because he was the only person in my life, at that time, who really believed how sick I was, and he wondered just what I had!

my mother used to comment about how delicate I was and that I needed to harden up…

1997 ...

Sadly, I had to stop my counselling diploma. It seemed like boy_2 didn’t like anyone caring for him, except me. It also seemed like no one else would put the effort in to get to know and like him and so everything was left to me and me alone. No one ever changed a nappy for me or did a feed. Not even when I had a migraine.

Gave birth to boy_2 (see above) ...

I grieved having to stop my counselling course for many years to come ...

there was so much loss in my life ...

My Health

During my pregnancy I was delicate to say the least but I think happiness papered over some of my symptoms and enabled me to enjoy this pregnancy with less anxiety than I’d had in my first. That said, I did get quite sick and had some blistering migraines. I also had a very long lasting chest infection for which I didn’t take anti-biotics, even though the doctor prescribed them. I really wanted this baby to grow naturally without additional medicines and toxins. Maybe the chest infection wasn’t good for him either because he was a very sickly baby until we moved to Cumbria.

On top of all this, not long after giving birth, I also developed some altered sensation in my right upper back. It burned, like it was on fire, but it also felt semi-numb. This was initially diagnosed by a physiotherapist and treated as a labour injury. However since then, it has been diagnosed as fibromyalgia and has spread to other parts of my upper back and limbs.

1998 ...

Struggling so much to keep my head above water. I had a teenager and a baby all the time, plus three other children very regularly.

My upper back was so bad now that I couldn’t manage to make family meals in one go. I had to space the preparation of them out into sections throughout the day. And then have one last blast just before my husband arrived home from work.

I was definitely no longer plodding ... I was dragging myself and my kids along. Married life had made my life, and illness, so much worse.

My Health

Same as ever, just more severe. Migraine after migraine. Pain that some days would stops me in my tracks and I had these double whammy style migraines where I would feel as though I had two kinds of migraine going on in one attack.

Despite the above, I hadn’t yet started taking pain medications ... I would go to bed with the sickie bucket and do only the care of my baby. My migraine and my inability to function was causing tension and arguments were happening all the time as a result of me going to bed to recover.

1999 ...

By this point, I had also started to take boy_1 to school wearing my PJs or with clothes over the top of them, hoping the car wouldn’t break down. School was too far from home for him to walk, plus he had been staying off without permission and had been out on a card that needed to be signed by each class teacher to say he had attended the whole lesson.

My Health

My life was dominated by migraine and pain. As I look back, I’ve no idea how I made it through some days. And still people around me, especially those who should know better, think I’m ok and just moaning, or lazy, when I say how I feel.

I was loosing my spirit ...

I felt like I’m drowning and that no one cared ...

2000 ...

I don’t know how I made it through these years ...

Family life, at this time, was very difficult and I felt unloved, uncared for and invisible. I had issues with boy_1 and boy_2 was always sick, and I means always. I think without anti-biotics he would have died he was that unwell.

And we were also planning on moving because of work and personal reasons.

My Health

I was having migraine that lasted days and I was loosing so much time to them. I didn’t have a life away from it all.

Still no one, medically, really knew what was wrong with me. On top of everything else, I had also developed TMJ and MCS and facial neuralgia. Everything I got seemed to give me more pain!

 

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2001 (a diagnosis) ...

It was after moving to Morecambe and registering at a new surgery that I got a referral to Lancaster hospital where I finally received a diagnosis.  The letter I received said:

Dear Denise,
... It was my feeling that when we met that you had nuisance physical symptoms, but without a serious medical cause to underpin this. It is possible that you might have a chronic fatigue syndrome or fibromyalgia, but there is no pointer to anything serious ...

At the time I was gobsmacked and really wondered how on earth what I was dealing with could ever have been classed as mild and not serious. I found it offensive.

My thoughts at the time:

It seemed to make a mockery of the pain I was feeling almost every day ...

When we met that you had NUISANCE Physical Symptoms ...

It is POSSIBLE that you MIGHT have a Chronic Fatigue Syndrome or Fibromyalgia Syndrome ...

There is NO pointer to ANYTHING SERIOUS ...

I now, in 2021, know different - I realise I was mild, at the time I was diagnosed, it just seemed and still seems like the most ridiculous way to explain something that impacts every aspect of your life. Its life impact is never mild, even if the level of ME is, and it is always serious. I have now been ill for more of my life than I have been well and its impact on my life experience most certainly hasn’t been mild or not serious.

I now had to move on from this ... with medical profession, at that time, all having the same attitude towards ME; like it was no real big ...

but it was very much a big deal ...

 

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2000 - 2005 (married years) ...

2000 ...

... (see above) ...

My Health

... I was having migraine that lasted days and I was loosing so much time to them. I didn’t have a life away from it all. I was having migraine that lasted days and I was loosing so much time to them. I didn’t have a life away from it all ...

2001 ...

I got a diagnosis (see above) ...

We moved to Heysham, in Morecabe, as a family. Things got really tricky between boy_1 and my husband, which culminated in my husband throwing boy_1. In fact things were difficult all round. This was such a difficult time for me. I was getting sicker and so was boy_2.

Not long after the move, away from everyone I knew, my husband lost his job and started to work away from home. I got sicker. Boy_2 got sicker. My husband came home weekends to get his washing done and that was it. I was alone again.

It was at this time I got considerably sicker and was finally diagnosed with ME.

My Health

I was now seriously poorly. I couldn’t get out of bed. I couldn’t get up or down the stairs. And I had no one, not one single person, to help me. As I reflect back, I think physically and emotionally this has to be one of the hardest and loneliest times of my life. But, it taught me how to be alone again, and how to stand on my own two feet again.

2002 ...

I am a grandmother ... in September of this year boy_1.1 was born to boy_1 ...

My Health

I think it was around this time that I realised I had pain everywhere. I had so much pain, and most of the time too. I was exhausted but couldn’t sleep. I wasn’t eating but was gain8 g weight. I wondered, probably for the second time now, did I have cancer and it was being missed.

you know deep inside that you can’t feel this unwell and not be seriously ill ... but the doctors just kept telling me otherwise ...

L E A R N

T O

L I V E

W I T H I N

Y O U R

N E W

E N E R G Y

E N V E L O P E

which is just so f**king hard ...

2003 ...

Early 2003, boy_1 moved back to Manchester with his GF and boy_1.1. So we put our house on the market and late spring, early summer I moved to Cumbria with boy_2 to live back with my husband in our static caravan.

My Health

My health was terrible. I would now have week long migraines. In fact, I seemed to literally go from one migraine to the next one ...

2004 ...

It was June 2004 when we moved into a lovely house in a lovely village called Allerby. The move was hard but boy_2 started to revolver and went back to school at this time.

My Health

My health was terrible. I would now have week long migraines. In fact, I seemed to literally go from one migraine to the next one ...

2005 ...

Towards the end of 2004 we moved again to a village, called Hayton, just a couple of miles from Allerby.

All the moving was really taking its toll on my health. This is the point in my illness timeframe that I really stopped doing things. I’d take my son to school, come home and rest until tea time. And I was still getting sicker.

My Health

I was now in the moderate group. I was telling people and crying out for support and help. But my cries were going unheard. I also went into early menopause. Migraine and pain was not something I lived with on a daily basis.

I had now been ill now for more of my life than I had been well ...

Read that again and imagine what that actually means in reality ...

 

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2005 - 2010 (married years) ...

2005 ...

Towards the end of 2004 we moved again to a village, called Hayton, just a couple of miles from Allerby.

All the moving was really taking its toll on my health. This is the point in my illness timeframe that I really stopped doing things. I’d take my son to school, come home and rest until tea time. And I was still getting sicker.

My Health

I was now in the moderate group. I was telling people and crying out for support and help. But my cries were going unheard. I also went into early menopause. Migraine and pain was not something I lived with on a daily basis.

I had now been ill now for more of my life than I had been well ...

Read that again and imagine what that actually means in reality ...

2006 ...

I’m a grandmother again ... in June of this year girl_1.1 was born to boy_1 ...

Towards the end of the year, September to be exact, we moved to Moresby, which is in Whitehaven. The move was to make things easier for us all. Closer to school fir me, in face it’s only a mile away. Closer to work for the husband. A smaller garden. Just hopefully easier all round.

I am so lost in this illness. And I need to be able to find some personal definition.

I have started and Open University (OU) honours degree ...

My Health

I am now having migraines so frequently that I feel I just roll out of one and into the next one.

2007 ...

Life feels a struggle and I’m not happy ...

My Health

Migraines ...

2008 ...

I started working part-time at your local school for children & young people with profound and complex learning difficulties.

I love it.

The work place doesn’t allow perfumes, which is so bloody perfect for me. And the blinds are almost always closed as the children need low stimulation. It works so well done me.

My Health

I love my job. But I am a still often off work loads because of migraines ...

2009 ...

Struggling with health issues and I am so unhappy ...

My Health

Migraines ...

2010 ...

Carrying on pushing myself to manage my children and work even less part-time for even less of the year.

I’m extremely unwell and still I carry on.

My Health

I am so poorly that for a good few years now I’ve been using the car to take my son to school and to collect him too. Yes it’s only a mile away but I can’t do it any more.

 

1
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2010 - 2015 (married years) ...

2010 ...

Carrying on pushing myself to manage my children and work even less part-time for even less of the year.

I’m extremely unwell and still I carry on.

My Health

I am so poorly that for a good few years now I’ve been using the car to take my son to school and to collect him too. Yes it’s only a mile away but I can’t do it any more.

2011 ...

Completed my degree with the OU ...

I am immense proud of myself ... this is probably one of the only times in my life that I actually feel proud of who I am and what I have managed to achieve despite everything that I am dealing with ...

I have a first class honours open degree (mainly duration & psychology) ...

My Health

Same as always. Daily morning excruciating pain, and relentless migraines.

2012 ...

Being bullied at work ... and so I left because it was devastating for me ...

My Health

Same as always. Daily morning excruciating pain, and relentless and never ending migraines ...

2013 ...

Paid to have treatment via The Optimum Health Clinic, which was soo expensive and really didn’t make any difference whatsoever.

My Health

I’m back seeing a lovely lady at the Keswick ME clinic. She’s as worried about my health as I am. I just can’t stop triggering adrenaline in order to be able to carry on and it’s making me sicker by the day.

2014 ...

Don’t ask why, but I got another part time job... I really am struggling to know what to do, what I can do, and how to have a life that feels worthy.

I know why I have done this again, but it’s extremely personal and I don’t feel I can share it yet ...

My Health

My health is appalling and it’s causing issues within the family too. I am accused of not doing enough. I am always ill. I am taking pain medications by the score. And  I somehow feel that getting a job is the answer. All it has done is increase my migraine frequency.

2015 ...

We bought a plot of land, for building on, in a beautiful village on the edge of the Lake District national park.

In April we bought a plot of land, in a beautiful village on the edge of the Lake District National Park. The plot originally came on the market in 2008, but we couldn’t afford it then. However, after some serendipitous manoeuvrings we could now afford it and so we bought it.

My Health

I was working part-time at our local surgery and having more time off than in. So I gave the job up in order to try to recover some.

I applied for PiP, but was refused.

 

1
0

2015 - 2020 (married years) ...

2015 ...

In April we bought a plot of land, in a beautiful village on the edge of the Lake District National Park. The plot originally came on the market in 2008, but we couldn’t afford it then. However, after some serendipitous manoeuvrings we could now afford it and so we bought it.

My Health

I was working part-time at our local surgery and having more time off than in. So I gave the job up in order to try to recover some.

I applied for PiP, but was refused.

2016 ...

We had wanted to build this year but because of the floods at the end of 2015, all the local builders were busy fixing flooded homes as a priority.

My Health

In my usual typical style I got myself another job, this time as an appropriate adult on call, where I could pick my own hours and days. I absolutely loved this job. But I only managed about 6 months of working 4 hours for 4 days a week. Again I just couldn’t do it due to sickness, migraines and utter exhaustion.

I applied for PiP again, and was again refused.

2017 ...

Our build started in April this year and we had to travel every single night to check on things. Very exciting but absolutely exhausting. 

My Health

During the build time I didn’t work.

I applied for PiP again, and I was refused again.

By the time we moved in to our new build I had applied for another very part-time job, just 2 days a month as a SPIP practitioner.

2018 ...

I’m a grandmother again ... in November of this year girl_2.1 was born to boy_1 ...

We moved into our new build home in March this year.

I started my new job, as a SPIP practitioner, the April after moving in our new home. It was a very part-time job, just 2 days a month. Very sadly, after 6 months I had to leave because I was seriously unwell.

My Health

I had now made myself severe. I couldn’t do anything. I barely got dressed. Whenever I had a bath and washed my hair I would end up with a severe migraine the following day. I started going from the bed to the settee and that was it I could do nothing else. This is how I spent the rest of the year.

At this devastating time of my life, the only friend I had ghosted me. Part of me was devastated but on reflection she didn’t really understand the illness or how it was impacting my life and I know she felt things were unfair because she occasionally visited me but I didn’t visit her. She obviously didn’t understand how sick I was and now, in 2021, I’m relieved she is no longer in my life.

2019 ...

friendship lost : best friends no more and never ever again too ...

My Health

I started and continued the year as 2018, going from the bed to the settee. Every time I tried to do something I made myself sicker. And I’m talking about basic things like trying to wash daily, or get dressed daily. I could not longer do the basics in order to feel like a woman. My health deteriorated so badly that I don’t go out, I don’t get dressed.

I applied for PiP again. This time I was awarded enhanced for both components.

I no longer live I am barely alive ...

2020 ...

the year the whole world got to stay home too (see below) ...

My Health

My health has stayed severe. I haven’t improved by not doing anything and when I try to do things consistently, like get dressed a few days in a row, I end up in bed with a severe migraine. It’s just not worth it. The price is much too high a price to pay for the activity. And so I only get dressed for medical appointments. I try to bathe weekly and wash my hair when I bathe but sometimes I just can’t do it. I can’t even manage to brush my teeth twice a day without payback (known as post exertional malaise (PEM)). Some days, I do stay in bed but when I can I get up and lay on the settee instead. I know it’s just geography but it makes me feel a bit more normal. Whereas, staying in bed all the time makes me feel proper sick and scared.

I have only seen my youngest granddaughter (born in 2018) 4 times in person. My older granddaughter (born 2006) iMessages me and we sometimes chat. But I’ve missed out on so much time with them because of this illness. My life has become very limited and small.

this illness has stolen so so much from me ...

All of that said, having my husband home due to lockdown has been a real blessing in disguise for us both, but especially for me.

 

1
0

2020 (the year the whole world got to stay home too) ...

The year when the whole world got to stay home too ...

but perhaps the most undefinable year I’ve ever lived through ...

For so long, people have been telling us ‘the chronically sick’ how lucky we are that we get to stay at home all day.

Now, in 2020, they too got to stay home too.

And did they like it?

Did they f**k!

I’ve never in the whole of my life heard so much bloody moaning from people who ironically thought that we, the chronically sick, were lucky because we got to stay home all the time. And now they had to, well it now became an entirely different story. And to pointedly note, they weren’t even sick. They could still wash and bathe, make meals for themselves, clean their houses, garden, decorate, play with their children, listen to music and watch TV and even communicate with people who they live with, or chat on the phone or even gather together, in groups, online. They could actually do whatever, whenever, they felt like it; the only rule was it had to be done safely. They could even exercise, or go for a gentle walk as a form of exercise, if the fancy took them. Things, that although we get to stay home all day, most of us can’t do. And haven’t been able to do for such a very long long time. Things the ‘well’ are obviously still taking for granted, otherwise they’d have begun to appreciate such abilities as well as gaining some empathy and understanding for us regarding just how difficultly soul destroying having to stay home all day, with all the nuances that go with being sick, can be. And furthermore if they were, sadly, furloughed, at least they got 80% of their income for doing nothing. Or even worse still, if they lost their job, they could at the very least, after COVID and lockdown, look for work and be able to earn again. For years many of us have been unwaged, and without social assistance too, but unable to earn or look for work so we could earn a living.

for myself, just to be able to take basic care of myself, financially and physically, would be enough ...

lockdown for me ...

the good ... many people have been able to book inwards and transfer this enlightenment to the situation of those who live with chronic illness ... this has been a wonderful thing for us ...

Lockdown has been extremely beneficial for me because it’s allowed my husband to see just how very sick I am and now I have him in my corner, fighting with and for me, which is extremely powerful. Because of what he’s seen and been able to comprehend he has become so much more supportive and helpful. And dare I say, he now believes just how sick I am. Whereas previously, I think he thought I was exaggerating about how bad my days were because he would see me after I’d triggered adrenaline bursts in order to make tea for when he got home from work.

the bad ... some continue to deny the reality of ME/CFS and now COVID too, which for some seems to be developing into a Long-Covid (long-covid seems to be simply a more acceptable name for ME/CFS or maybe I can call my illness Very Very Long Glandular Fever and get much more recognition than when I say I have ME) ...

unenlightened covidiots is what I’d call them!

That said, for me, there have also been some non beneficial things to come from lockdown ...

to be continued ...

the ugly ... worse still, some actually believe that they have cured their souls from ME/CFS purely by exercise or something they’ve done within their own willpower ...

f**king f**kwits is the only name that comes to mind ...

to be continued ...

 

1
0

2020 - 2025 (married years) ...

2020 ...

perhaps the most undefinable year I’ve ever lived through ... (see above for my personal views on 2020)

My Health

...

2021 ...

The year started off with the UK leaving the EU and the whole country still in lockdown, with the government allowing movement on the just gone Christmas Day only.

Lockdown still works for me because it means my husband is still working from home, which is wonderful because I’m rarely alone. Plus, he makes the bed on days when I can’t or when I need a break, which is every single day right now. He also prepares and cooks tea every night, which is usually the same meal, but this is because it’s all my digestion can cope with and so works well for me and doesn’t seem to mind either. On the whole, I can’t eat breakfast or lunch. And most importantly, he is there if / when I need him urgently. I think I can safely say that we would both be extremely happy to continue living like this for the foreseeable future.

My Health

Despite having my husband to help, I’m still extremely ill every single day. I wake up with headaches daily, often migraines, which can be unbearable. Even though, I sleep most nights, the exhaustion is indescribable. I only get to brush my teeth and come downstairs because of sheer determination. I change my pyjamas every other day. I have a bath once a week and I try really hard to wash my hair weekly too, but this does not happen every week due to how poorly I feel every day. I may get up and go downstairs and lay on the settee most days but this is just geography and so that I can be closer to company, in the form of my husband. That said, I could definitely be classed as bedridden.

2022 ...

My Health

...

2023 ...

My Health

...

2024 ...

My Health

...

2025 ...

My Health

...

 

1
0

Your Stories ...

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If you have any other suggestions for ‘anything’ you would like me to write about or if you would like to contribute your own piece to fragmented.ME, please contact me using this contact form.

Last Updated on 15/04/2021 by fragmented_ME

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10 steps to practicing Radical Acceptance
according to DBT’s founder, Marsha Linehan:

 

1.  Observe that you are questioning or fighting reality (“it shouldn’t be this way”)

2.  Remind yourself that the unpleasant reality is just as it is and cannot be changed (“this is what happened”)

3.  Remind yourself that there are causes for the reality (“this is how things happened”)

4.  Practice accepting with your whole self (mind, body, spirit) - Use accepting self-talk, relaxation techniques, mindfulness and/or imagery

5.  List all of the behaviors you would engage in if you did accept the facts and then engage in those behaviors as if you have already accepted the facts

6.  Imagine, in your mind’s eye, believing what you do not want to accept and rehearse in your mind what you would do if you accepted what seems unacceptable

7.  Attend to body sensations as you think about what you need to accept

8.  Allow disappointment, sadness or grief to arise within you

9.  Acknowledge that life can be worth living even when there is pain

10.  Do pros and cons if you find yourself resisting practicing acceptance

Logo of ijpsych

2009 Oct-Dec; 51(4): 239–241.
doi: 10.4103/0019-5545.58285: 10.4103/0019-5545.58285
PMCID: PMC2802367
PMID: 20048445

The biochemistry of belief

Address for correspondence: Dr. TS Sathyanarayana Rao, Department of Psychiatry, JSS University, JSS Medical College Hospital, M.G. Road, Mysore - 570 004, India. E-mail: moc.oohay@91oarsst
This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

“Man is what he believes”

Anton Chekhov

Beliefs are basically the guiding principles in life that provide direction and meaning in life. Beliefs are the preset, organized filters to our perceptions of the world (external and internal). Beliefs are like ‘Internal commands’ to the brain as to how to represent what is happening, when we congruently believe something to be true. In the absence of beliefs or inability to tap into them, people feel disempowered.

Beliefs originate from what we hear - and keep on hearing from others, ever since we were children (and even before that!). The sources of beliefs include environment, events, knowledge, past experiences, visualization etc. One of the biggest misconceptions people often harbor is that belief is a static, intellectual concept. Nothing can be farther from truth! Beliefs are a choice. We have the power to choose our beliefs. Our beliefs become our reality.

Beliefs are not just cold mental premises, but are ‘hot stuff’ intertwined with emotions (conscious or unconscious). Perhaps, that is why we feel threatened or react with sometimes uncalled for aggression, when we believe our beliefs are being challenged! Research findings have repeatedly pointed out that the emotional brain is no longer confined to the classical locales of the hippocampus, amygdala and hypothalamus.[1] The sensory inputs we receive from the environment undergo a filtering process as they travel across one or more synapses, ultimately reaching the area of higher processing, like the frontal lobes. There, the sensory information enters our conscious awareness. What portion of this sensory information enters is determined by our beliefs. Fortunately for us, receptors on the cell membranes are flexible, which can alter in sensitivity and conformation. In other words, even when we feel stuck ‘emotionally’, there is always a biochemical potential for change and possible growth. When we choose to change our thoughts (bursts of neurochemicals!), we become open and receptive to other pieces of sensory information hitherto blocked by our beliefs! When we change our thinking, we change our beliefs. When we change our beliefs, we change our behavior.

A mention of the ‘Placebo’ is most appropriate at this juncture. Medical history is replete with numerous reported cases where placebos were found to have a profound effect on a variety of disorders. One such astounding case was that of a woman suffering from severe nausea and vomiting. Objective measurements of her gastric contractions indicated a disrupted pattern matching the condition she complained of. Then a ‘new, magical, extremely potent’ drug was offered to her, which would, the doctors proclaimed, undoubtedly cure her nausea. Within a few minutes, her nausea vanished! The very same gastric tests now revealed normal pattern, when, in actuality, she had been given syrup of ipecac, a substance usually used to induce nausea! When the syrup was presented to her, paired with the strong suggestion of relief of nausea, by an authority figure, it acted as a (command) message to the brain that triggered a cascade of self-regulatory biochemical responses within the body.[2] This instance dramatically demonstrates that the influence of placebo could be more potent than expected drug effect.

An important observation was that, part of the placebo response seemed to involve the meaning of the disorder or the illness to the individual. In other words, the person's belief or how she/he interprets (inter-presents or internally represents) directly governs the biological response or behavior. Another remarkable study involved a schizophrenic. This woman was observed to have split personality. Under normal conditions, her blood glucose levels were normal. However, the moment she believed she was diabetic, her entire physiology changed to become that of a diabetic, including elevated blood glucose levels.[3]

Suggestions or symbolic messages shape beliefs that in turn affect our physical well being. Several cases of ‘Disappearance of warts’ have been reported by Ornstein and Sobel wherein they ponder on how the brain translates the suggestions (sometimes using hypnosis) into systematic biochemical battle strategies such as chemical messengers sent to enlist the aid of immune cells in an assault on the microbe-induced miniature tumor or probably small arteries are selectively constricted, cutting off the vital nutrient supply to warts but not touching the neighboring healthy cells.[2]

Findings of carefully designed research indicate that our interpretation of what we are seeing (experiencing) can literally alter our physiology. In fact, all symptoms of medicine work through our beliefs. By subtly transforming the unknown (disease/disorder) into something known, named, tamed and explained, alarm reactions in the brain can be calmed down. All therapies have a hidden, symbolic value and influence on the psyche, besides the direct specific effect they may have on the body.

Just as amazingly life-affirming placebos are, the reverse, “Nocebo' has been observed to be playing its part too. It is associated with negative, life-threatening or disempowering beliefs. Arthur Barsky, a psychiatrist states that it is the patient's expectations – beliefs whether a drug or procedure works or will have side effects – that plays a crucial role in the outcome.[4]

The biochemistry of our body stems from our awareness.[5] Belief-reinforced awareness becomes our biochemistry. Each and every tiny cell in our body is perfectly and absolutely aware of our thoughts, feelings and of course, our beliefs. There is a beautiful saying ‘Nobody grows old. When people stop growing, they become old’. If you believe you are fragile, the biochemistry of your body unquestionably obeys and manifests it. If you believe you are tough (irrespective of your weight and bone density!), your body undeniably mirrors it. When you believe you are depressed (more precisely, when you become consciously aware of your ‘Being depressed’), you stamp the raw data received through your sense organs, with a judgment – that is your personal view – and physically become the ‘interpretation’ as you internalize it. A classic example is ‘Psychosocial dwarfism’, wherein children who feel and believethat they are unloved, translate the perceived lack of love into depleted levels of growth hormone, in contrast to the strongly held view that growth hormone is released according to a preprogrammed schedule coded into the individual's genes!

Providing scientific evidence to support a holistic approach to well being and healthcare, Bruce Lipton sheds light on mechanism underlying healing at cellular level. He emphasizes that ‘love’ is the most healing emotion and ‘placebo’ effect accounts for a substantial percentage of any drug's action, underscoring the significance of beliefs in health and sickness. According to him, as adults, we still believe in and act our lives out based on information we absorbed as children (pathetic indeed!). And the good news is, we can do something about the ‘tape’ our subconscious mind is playing (ol' silly beliefs) and change them NOW.[6] Further recent literature evidences provided knowledge based on scientific principles of biology of belief. There are limited studies on clinics of traditional beliefs and if we get more scientific data, we can use these traditional systems in clinical mental health management. Human belief system is formed by all the experiences learned and experimented filtered through personality.[7] The senses to capture inner and outer perceptions have higher brain potentials. Some questions that arise in this context are, does the integration and acceptance of these perceptions result in the establishment of beliefs? Does the establishment of these beliefs depend on proof demonstrations? The proofs might be the perceptions, which we can directly see or having scientific proof or custom or faith.[8,9] Beliefs are developed as stimuli received as trusted information and stored in the memory. These perceptions are generalized and established into belief. These beliefs are involved in the moral judgment of the person. Beliefs help in decision-making. Bogousslavsky and Inglin explained that, how some physicians were more successful by taking an account of patient beliefs. Beliefs influence factors involved in the development of psychopathology. They also influence the cognitive and emotional assessment, addictiveness, responses to false positives and persistent normal defensive reactions. Total brain function is required in stabilizing the belief and in responding to environmental system. Some of the brain regions and the neural circuits are very important in establishing beliefs and executing emotions. Frontal lobes play a major role in beliefs. Mental representations of the world are integrated with sub-cortical information by prefrontal cortex. Amygdala and Hippocampus are involved in the process of thinking and thus help in execution of beliefs. NMDA receptor is involved in thinking and in the development of beliefs. These beliefs are subjected to challenge. A belief that is subjected to more challenges becomes stronger. When a new stimulus comes, it creates distress in the brain with already existing patterns. The distress results in the release of dopamine (neurotransmitter) to transmit the signal.[10,11] Research findings of Young and Saxe (2008) revealed that medial prefrontal cortex is involved in processing the belief valence.[12] Right temporoparietal junction and precuneus are involved in the processing of beliefs to moral judgment. True beliefs are processed through right temporoparietal junction.[13,14] Saxe (2006) explained that beliefs judging starts at the age of five years citing example of judging of belief questions on short stories by the children.[15] Belief attribution involved activating regions of medial prefrontal cortex, superior temporal gyri and hippocampal regions. Studies by Krummenacher et al, have shown that dopamine levels are associated with paranormal thoughts suggesting the role of dopamine in belief development in the brain.[16] Flannelly et al, illustrated on how primitive brain mechanisms that evolved to assess environmental threats in related psychiatric disorders.[17] Also were highlighted the issues such as the way beliefs can affect psychiatric symptoms through these brain systems. The theories discussed widely are related to (a) link psychiatric disorders to threat assessment and (b) explain how the normal functioning of threat assessment systems can become pathological. It is proposed that three brain structures are implicated in brain disorders in response to threat assessment and self-defense: the regions are the prefrontal cortex, the basal ganglia and parts of limbic system. The functionality of these regions has great potential to understand mechanism of belief formation and its relevance in neurological functions/dysfunctions. Now it is clear that biology and physiology of belief is an open area for research both at basic and clinical level. The future directions are to develop validated experimental or sound theoretical interpretation to make ‘BELIEF’ as a potential clinical management tool.

Perceptual shifts are the prerequisites for changing the belief and hence changing the biochemistry of our body favorably. Our innate desire and willingness to learn and grow lead to newer perceptions. When we consciously allow newer perceptions to enter the brain by seeking new experiences, learning new skills and changed perspectives, our body can respond in newer ways –this is the true secret of youth. Beliefs (internal representations/interpretations) thus hold the magic wand of remarkable transformations in our biochemical profile. If you are chasing joy and peace all the time everywhere but exclaim exhausted, ‘Oh, it's to be found nowhere!’, why not change your interpretation of NOWHERE to ‘NOW HERE’; just by introducing a gap, you change your awareness – that changes your belief and that changes your biochemistry in an instant!

Everything exists as a ‘Matrix of pure possibilities’ akin to ‘formless’ molten wax or moldable soft clay. We shape them into anything we desire by choosing to do so, prompted, dictated (consciously or unconsciously) by our beliefs. The awareness that we are part of these ever-changing fields of energy that constantly interact with one another is what gives us the key hitherto elusive, to unlock the immense power within us. And it is our awareness of this awesome truth that changes everything. Then we transform ourselves from passive onlookers to powerful creators. Our beliefs provide the script to write or re-write the code of our reality.

Thoughts and beliefs are an integral part of the brain's operations. Neurotransmitters could be termed the ‘words’ brain uses to communicate with exchange of information occurring constantly, mediated by these molecular messengers. Unraveling the mystery of this molecular music induced by the magic of beliefs, dramatically influencing the biochemistry of brain could be an exciting adventure and a worth pursuing cerebral challenge.

REFERENCES

1. Candace Pert. Molecules of emotion: Why you feel the way you feel. New York, USA: Scribner Publications; 2003. ISBN-10: 0684846349.
2. Ornstein R, Sobel D. The healing brain: Breakthrough discoveries about how the brain keeps us healthy. USA: Malor Books; 1999. ISBN-10: 1883536170.
3. Robbins A. Unlimited power: The new science of personal excellence. UK: Simon and Schuster; 1986. ISBN 0-7434-0939-6.
4. Braden G. The spontaneous healing of belief. Hay House Publishers (India) Pvt. Ltd; 2008. ISBN 978-81-89988-39-5.
5. Chopra D. Ageless body, timeless mind: The quantum alternative to growing old. Hormony Publishers; 1994. ISBN -10: 0517882124.
6. Lipton B. The biology of belief: Unleashing the power of consciousness, matter and miracles. Mountain of Love Publishers; 2005. ISBN 978-0975991473.
7. Bogousslavsky J, Inglin M. Beliefs and the brain. Eur Neurol. 2007;58:129–32. [PubMed: 17622716]
8. Gundersen L. Faith and healing. Ann Intern Med. 2000;132:169–72. [PubMed: 10644287]
9. Mueller PS, Plevak DJ, Rummans TA. Religious involvement, spirituality, and medicine: Implications for clinical practice. Mayo Clin Proc. 2001;76:1225–35. [PubMed: 11761504]
10. Patel AD, Peretz I, Tramo M, Labreque R. Processing prosodic and musical patterns: A neuropsychological investigation. Brain Lang. 1998;61:123–44. [PubMed: 9448936]
11. Tramo MJ. Biology and music. Music of the hemispheres. Science. 2001;291:54–6. [PubMed: 11192009]
12. Young L, Saxe R. The neural basis of belief encoding and integration in moral judgment. Neuroimage. 2008;40:1912–20. [PubMed: 18342544]
13. Aichhorn M, Perner J, Weiss B, Kronbichler M, Staffen W, Ladurner G. Temporo-parietal junction activity in theory-of-mind tasks: Falseness, beliefs, or attention. J Cogn Neurosci. 2009;21:1179–92. [PubMed: 18702587]
14. Abraham A, Rakoczy H, Werning M, von Cramon DY, Schubotz RI. Matching mind to world and vice versa: Functional dissociations between belief and desire mental state processing. Soc Neurosci. 2009;1:18. [PubMed: 19670085]
15. Saxe R. Why and how to study Theory of Mind with fMRI. Brain Res. 2006;1079:57–65. [PubMed: 16480695]
16. Krummenacher P, Mohr C, Haker H, Brugger P. Dopamine, paranormal belief, and the detection of meaningful stimuli. J Cogn Neurosci. 2009 Jun 30; [Epub ahead of print] [PubMed: 19642883]
17. Flannelly KJ, Koenig HG, Galek K, Ellison CG. Beliefs, mental health, and evolutionary threat assessment systems in the brain. J Nerv Ment Dis. 2007;195:996–1003. [PubMed: 18091193]

Articles from Indian Journal of Psychiatry are provided here courtesy of Wolters Kluwer -- Medknow Publications

HRPacing ...

Description

Heart Rate Pacing is a technique used to stay within ones energy reserves. The anaerobic threshold (AT) is the heart rate at which aerobic energy surges. The threshold is often around about 60% of a ones maximum heart rate, though each person is different and an individual's threshold may vary from day to day or within a day.

(Note: Maximum heart rate is 220 minus ones age. For a 50 year old, 60% of maximum heart rate is (220 - 50) x 0.6 = 102 bpm.)

Features:

* Changes colour to indicate:

- Resting - (REST) Lavender

- Recovery (RECOVER) - Green (RHR + 10%)

- Exertion (EXERT) - Orange (RHR + 20%)

- Anaerobic Threshold (AT) - Red ((220-50)x0.6)

* Set an alert based on:

- reaching Anaerobic Threshold Zone, or

- custom set Maximum Heart Rate.

* Set the Anaerobic Threshold Tolerance from 0.6 (default) to 0.5 if desired.

* Set a custom interval between alerts (15 secs default).

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ME Awareness Fundraising : Ten Books In Ten Months

 

I am fundraising for The ME Trust UK as part of ME Awareness 2021

I will be fundraising for ten months starting in May 2021 through to end of February 2022.

Please take the time to read what it is about and donate if you can.

I am going to read 10 books in 10 months and document them on my ‘ten books in ten months ...’ page.

Please click the link above or below to donate and help me raise as much money as we can
for The ME Trust UK

I have been sick since 1984. It took till 2001 for doctors to diagnose me with ME.
Initially, I was mildly sick then moderately but in recent years I’ve progressed to being severely affected.
I am housebound and often bedbound for months on end.

I really want to raise awareness and to raise money to help research #endME.

I am planning on reading ten books in ten months starting 12th May, which is international ME Awareness Day.
At one time in my life I could have read ten books in ten days. But this challenge will be hard for me to do.

So please please if you can support me and help raise money for the ME Trust UK

YOU CAN DONATE BY CLICKING THE LINK BELOW

ME Awareness Fundraising : Ten Books In Ten Months

[give_form id="3285"]

help me fund my ME treatment ...

... help me fund my ME treatment ...

you can choose to donate as much or as little by sliding the slider along

you can pay for the introductory workshop by donating £65

you can pay for an individual care plan by donating £71

you can pay for a monthly session by donating £71

you can pay for an individual progression plan by donating £71

you can pay for a medical review by donating £121

you can pay for a medical follow up by donating £121

you can pay for the individual assessment by donating £141

you can pay for a medical assessment by donating £187

Thank you very much !

help me fund my assessment treatments ...

... help me fund my ME treatment ...

you can choose to donate as much or as little by sliding the slider along

you can pay for a medical assessment by donating £187

you can pay for an initial assessment by donating £141

you can pay for a medical review by donating £121

Thank you very much !

help me fund my preparation for rehabilitation treatments ...

... help me fund my ME treatment ...

you can choose to donate as much or as little by sliding the slider along

you can pay for the introductory workshop by donating £65

you can pay for an individual care plan by donating £71

Thank you very much !

help me fund my rehabilitation treatments ...

... help me fund my ME treatment ...

you can choose to donate as much or as little by sliding the slider along

you can pay for a monthly session by donating £71

Thank you very much !

help me fund my follow up treatments ...

... help me fund my ME treatment ...

you can choose to donate as much or as little by sliding the slider along

you can pay for an individual progression plan by donating £71

you can pay for a medical follow up by donating £121

Thank you very much !

ME Awareness Fundraising : Ten Books In Ten Months

 

I am fundraising for The ME Trust UK as part of ME Awareness 2021

I will be fundraising for ten months starting in May 2021 through to end of February 2022.

You will see this pop once in each week that you visit my site during this ten month period.

Please take the time to read what it is about and donate if you can.

I am going to read 10 books in 10 months and document them on my ‘ten books in ten months ...’ page.

Please click the link above or below to donate and help me raise as much money as we can
for The ME Trust UK

I have been sick since 1984. It took till 2001 for doctors to diagnose me with ME.
Initially, I was mildly sick then moderately but in recent years I’ve progressed to being severely affected.
I am housebound and often bedbound for months on end.

I really want to raise awareness and to raise money to help research #endME.

I am planning on reading ten books in ten months starting 12th May, which is international ME Awareness Day.
At one time in my life I could have read ten books in ten days. But this challenge will be hard for me to do.

So please please if you can support me and help raise money for the ME Trust UK.

YOU CAN DONATE BY CLICKING THE LINK BELOW

ME Awareness Fundraising : Ten Books In Ten Months

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