fragmented.ME …
illness & health ...,  things ME made me do …

where is the …

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This is the start of a new series of quick blogs about ‘things ME made me do’, where I will discuss common things, or themes, that I’ve seen so many people with ME do. For me it has been a revelation realising that even the things we do can identify an ME patient.

things ME made me do …

Where is the …

oh I can’t even remember it’s name … what the blue blazers is it called … the thingy … ok the thing you use to blah blah blah …

The above are words that I am almost certain have been expressed by every single person with ME …

They are words that we know all too well.

 where is the blah blah blah 
 . . . said by every single ME patient . . . 

definitions …

Let’s first take a look at how ‘memory’ and ‘forget’ can be defined:

memory:[I]
the mental capacity or faculty of retaining and reviving facts, events, impressions, etc., or of recalling or recognizing previous experiences.
medical definition: The mental faculty of retaining and recalling past experience based on the mental processes of learning, retention, recall, and recognition.

forget:[II]
to cease or fail to remember; be unable to recall: to forget someone’s [or something’s] name.

Given those descriptions it is clear to see that poor memory and being forgetful are very closely intertwined. However, they don’t always go hand in hand; unless you have some cognitive condition, or ME and then you will see it often playing out in the ME patient’s life.

where is the …

Back to those words. You and others can hear you, yet again, frustratedly exclaiming where is the blah blah blah, and it can be, and frequently is, very telling.

In simple, face value, terms it tells us that someone is probably suffering from stress, poor memory, or an even more serious health condition. But, on a whole other level you will never find an unstressed regular healthy person with these kind of cognitive issues.

Needless to say, these kind of cognitive and memory issues are closely linked with having ME. In fact, cognitive issues are said to be high up on the disabling factors of having ME. Personally, I have found that the physically sicker I get the poorer my cognition becomes.

In support of the above ideas and thoughts, research into cognition and ME has shown that for many ME patients, (Cockshell, et al., 2010, stated on ME Research UK, 2010)[III]

Neurocognitive problems are one of the most frequent and disabling symptoms associated with ME/CFS. In one investigation, 89% of patients reported memory/concentration problems, while in another large study memory/attention deficit problems were reported by approximately 90% of 2,073 consecutive patients. Crucially, patients often report that their cognitive problems can be made worse by physical or mental exertion. But do such self-reported anecdotes about cognitive symptoms also show up as measurable deficits on objective cognitive testing in a clinical setting?

what does this tell us …

Well firstly, think about it … 💭 …

If your body is struggling to find or utilise energy, as is the case with ME, then it goes without saying that every part of you will suffer. When it comes specifically to the brain, it requires about 20% of your energy in order to function efficiently, which accounts to about 500 calories per day. So the brain is quite a demanding body organ and failure to get this energy usually results in the cognitive issues that we have discussed above and will highlight further as we continue.

Consequently, if you are already low on energy, and you are also unable to eat well due to the digestive issues accompanying ME, then your brain functions are definitely going to be impaired.

Furthermore, the research mentioned above also revealed the following interesting facts regarding ME patients’ cognition and memory function, (Cockshell, et al., 2010, stated on ME Research UK, 2010)[IV]

The most significant cognitive deficits ( see Graph ) were found in ‘attention’ (encompassing attention span and working memory), ‘memory’ (examined from verbal and visual memory tests, mostly memory for word lists) and reaction time (assessed as responses to both simple and complex choice stimuli). These results were consistent with the memory and concentration problems that patients themselves complain about. In contrast, there were no apparent deficits on tests of ‘fine motor speed’, ‘vocabulary’, ‘reasoning’ or ‘global functioning’, suggesting that the ‘higher order’ cognitive abilities such as language, reasoning and intelligence remain unimpaired. Importantly, most studies that examined the impact of self-reported depression on cognitive functioning failed to find a relationship, indicating that depression was not responsible for most cognitive impairments.

Ask yourself the question. Have you ever, either as a healthy person or prior to having ME, f you have ME, when you were healthy had cognitive or memory issues.

I’m pretty sure your answer is … No …

I think not … because it’s rare and more unlikely that you would struggle like this as a healthy person. Not even after a hard and gruelling day even to the extreme; you simply always have enough energy to supply all your body needs when you’re in a healthy state and most certainly after a good night sleep everything is usually restored.

so why not …

Well firstly, a healthy body provides the right amount of energy to the bodily functions and at the time it is required too. And when a healthy body rests, it recovers. However, this is not the case with ME.

so what is the difference for someone with ME …

Sadly, those with ME know all too well that because, as already highlighted in the preceding discussion, the amount of usable and accessible energy in a person with ME is impaired. Plus, energy is needed for every bodily function. With different organs requiring different amount. But when energy gets low it is the body’s main priority to keep you alive, not keep you clever. Consequently, it will divert energy to the most important bodily functions if there isn’t enough free energy available. Sometimes, and often in severe ME, this will mean your brain is left with too little energy and cognition will suffer.

takeaway …

Use the knowledge in this blog to know and understand that, if you repeatedly feel or behave cognitively impaired that there is a very good chance you are suffering with a symptom of having ME and the only answer is to …

STOP …

rest …

pace …

Additionally, I would add,

and listen to your body.

ME is a neuroimmune disease that, contrary to common misconceptions, is not characterised by chronic fatigue,
but rather by a severe exacerbation of symptoms which manifest after a minor physical or mental exertion.
This hallmark symptom characteristic of ME, known as Post-Exertional Malaise (PEM),
can persist for days, weeks or consequently be a the trigger for a relapse or deterioration.

Anil van der Zee

in summary & in conclusion …

Whenever you feel cognitive disfunction and / or can’t recall words,

💭 about your energy levels … and pull back … you probably do not have serious cognitive illness … you’re depleted of much needed energy …

Do not be too quick to dismiss it.

Maybe advise the person speaking them, be it yourself or a loved one, simply advise them to,

STOP …

REST …

PACE …

and listen to your body …

a personal concluding note …

I would conclude by stressing:

stop … rest … pace … listen to your body …

References:[+]

Please feel free to contact me to share your outcomes or with any questions you may have.

 fragmented.ME xXx

Last Updated on 17/05/2022 by fragmented_ME

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My birth name is Denise, but I’m know as Bella to those who love me. I have a first class honours degree in education & psychology and a strong passion to keep learning and educating others ... I have severe ME/CFS and lots of other chronic illnesses and I started this blog as an expansion to my instagram page, where I advocate for chronic illness. I am married and have two grown up boys, or should I say young men. I have three gorgeous grandchildren, one boy and two girls. And despite being chronically sick and housebound I am mostly happy. 🥰

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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).

* Displays 12/24 hour clock based on user settings in Fitbit profile.

cognitive deficits in patients with ME/CFS …

where is the …

[give_form id="3285"]

 

I am gathering together a living list of people with ME

you can view the list by going to ‘ME list …’ and clicking on each initial
the list is ordered alphabetically, by christian name

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Thank you very much !

… duplicitous …

duplicitous …

summary of the 5 major diagnostic criteria from 1988 onwards …

summary of the 5 major diagnostic criteria from 1988 onwards …

cognitive deficits in patients with ME/CFS …

where is the …

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