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catch up 31.12.2021 …

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Final Catch Up 12.2021 …

Yes, this is the final catch up of 2021 and for me it has been an exceptionally difficult year …

It is also going to be my last fortnightly catch up because I am moving over to a monthly edition. I have really struggled this year to keep up and do 24 p+ posts and so I am hoping that maybe 12 will make a difference but also allow me to still document this terrible illness and how it impacts my life on a regular basis. I do realise that the total days will not change however the admin involved in the blog posts will be halved.

Don’t forget whenever you see MiA … it means I have been unable to journal anything on that day due to serious illness or just because I was unable to do anything, except keep my head above water, on that particular day.

What’s New …

From now on I will do a monthly catch up journal post instead of fortnightly.

What’s Important …

If you could donate donate donate to help research ME and get us a test and treatment and maybe even a cure …

Diary (13.12.2021-31.12.2021)

Monday …

MiA

Tuesday …

MiA

S O U L   D E S T R O Y I N G   . . .

I am on my knees and feel so alone …

Wednesday …

MiA

I had a bath and washed my hair because I deserve to … and now I am severely poorly again …

… 😰 …

Thursday …

I didn’t sleep very well last night and so today I’m even sicker …

… 🙄 …

Friday …

MiA

f**k … f**k … f**k … it’s Friday … and I’m not ‘f**king’ because of it being Friday, even though I have every right too because it means that I’ve lost another week to this awful illness … but Friday is cleaning day in this house and it’s always very stressful, as if I am expected to, and have to, pay the price for you doing it … and not even as good as I did, for 23+ years too, I might add …

all the banging and under the breath mumbling really makes me uncomfortable and sad … it is extremely triggering and stress inducing … it feels abusive and as if it could be enough for me to make very drastic decisions because no one should ever have to feel this bad when they feel this poorly …

… f**k you …

Saturday …

MiA

I do not know how much longer I can carry on without breaking …

… 😕 …

Sunday …

MiA

I have had to come off social media for a while. Instagram is my social playground and where I make new friends, mingle, and also do most of my advocacy work. But yesterday, early in the morning when I couldn’t sleep and, as you do, I went down the rabbit hole and on some reactive adrenaline spin I decided to share what I’d found with my fellow ME sufferers.

The response of some of my followers was really shocking. In most cases they took it in their stride. However, for well over 30 of my followers the response was very acrimonious with many of them deciding to unfollow me and with plenty others making nasty comments and sending argumentative messages to me privately.

At the time I dealt with it, or so I thought, but this morning I am the sickest I have ever been. During most of the morning I actually felt as though I might die. And so, I have decided it is time to take a break from social media and I deleted my Instagram app. I will be back, but not until the new year. I will make a daily check on follower numbers using my ‘followers’ app and I will block all the followers who leave, which will mean, when I do return, if any of them have private messaged me or made nasty comments I won’t see them and I won’t be triggered again.

In response to the above, I also knew I needed something to occupy my mind and so I have bought myself some haikubes and I will spend some time making haiku poems, which I will share here. But, I am thinking that I may also save some of the best ones for a small kindle book as a kind of documentation of my journey through ME. It would be nice if I can make back the cost of the haikubes (only £32 in total) and it would be even nicer if I could support the website and cover some of my care costs with the proceeds. One can hope …

Monday …

MiA …

M I G R A I N E  think I’m coming down with something as I have awful sinus pain as well, which is something I don’t usually get …

Tuesday …

MiA

I was extremely unwell yesterday. Today is not much better. I’ve got a small cold and a nasty cough with sneezes and I feel quite poorly.

Wednesday …

MiA

For the last few days I’ve felt like I’ve been coming down with some heavy regular illness. Bizarre considering I don’t leave the house, like ever … but my husband collected his aged aunt from hospital and then spent the day with her and a houseful of her medical and social care people and he has obviously brought me home a ‘sickness’ ‘present’ because today I have a full on cough, sort throat, and cold. I’ve tested for covid, which was negative. Needless to say, on top of ME I now feel super …

… 💩 …

Thursday …

MiA

I am still feeling extremely unwell …

Friday …

MiA

Saturday …

MiA

Christmas Day and I am so lonely. The last time I can remember feeling this lonely was when I was a single parent, hanging on for the love of my life to change or make his mind up and I yearned to share my life with him, or at the very least with someone. Sadly it took another 8 or 9 years for me to accept and move on. I don’t feel as though I have 8 or 9 years left to wait for people to change and I also don’t think after this long that things will change. I am always going to be at the bottom of the ‘needs’ chain.

Actually, this has been the story of my life. Every single person who has ever been in my life, and claimed to care, has always put me last. Last in care, concerns, needs, support, help, … in everything actually except when they need me then I am top priority.

… wake up and smell the coffee girl …

Sunday …

MiA

woke with a massive headache … I really do not know how long my body can go on like this … 09:55 and 7 tablets later and I still feel rough like I’ve been drinking … and so another day in pain I’m guessing … happy Boxing Day …

… 9 years today since my mum died …

Monday …

This morning, for the first time in like forever, I woke with a normal headache, not a migraine type, and my tablets also actually worked.

So, as I sat chatting, having a pretty much general conversation, with my husband. Before I could stop myself, out of my mouth tumbled the words, ‘I’m feeling so poorly, day after day, right now that I’m not sure when I will next get a bath and a hair wash’ and the tears came, they started to flow and didn’t stop for ages.

I am so sad about feeling so poorly all the time and about the ‘no guarantees’ of change in my health, especially for the better.

It feels like I am in no man’s land. Too sick to do anything, and I mean anything, and deemed too well to have 100% care, not that I want it.

But it just leaves me nowhere …

I think I might be getting depressed. Right now, I’m just seriously low and I do hope I come out of it, but, I feel like I’m falling …

… 😔 …

Tuesday …

MiA

I think I’m getting depressed … I am not even interested in my morning coffee anymore … I’m not sure if this is due to lack of desire or because of lack of health and energy to make it … nobody makes me a morning drink … never … this too makes me feel incredibly alone and sad …

Wednesday …

Today has been very difficult.

I feel pretty much invisible, I always have, with you and some others too, but mainly with you because ‘with you’ counts for so much.

Before, as in earlier on today, I literally stood right next to you, directly looking at each other, speaking about something I was going to do and you nodded, like a f**king nodding dog, as though you were listening to me and as if you had heard me.

Then, not five minutes later, you picked the item up and ask me ‘why have you left this here’?

🤦🏻‍♀️

I literally just told you … and then all you can do is berate me …

This, I am afraid, is a lifelong issue. I am so sad that you don’t ‘listen’ and actually ‘hear’ me … so much so, that the whole thing has plummeted me and my spirit and I am now, seriously, wondering why I am still here … yes really … I am …

OH and another thing … if, as you have also just said, that I am sicker than xxxxx, then why is it you left me alone on Xmas day to visit xxxxx … really why … what does that say about me and where I stand in the scheme of ‘us’ … if there is actually an ‘us’ anymore …

Thursday …

MiA

. . .   F M L   . . .

Friday …

I spent a lot of today going over and re-reading my previous ‘catch up’ blogs, or maybe they should be more appropriately termed ‘journal’ entries.

I feel pretty sad reading them and actually realising this is my life also makes me realise how cut off, emotionally, from it all I have become. It’s so hard to ‘feel’ because to feel is not much different to ‘do’ when it comes to the energy systems and being able to process the feeling. And so, as a result, my journal entries are very much statements and sometimes, in reading them, they feel itemised.

ANOTHER YEAR
oh WoW we survived
another year we’re alive
yet not true living

My latest haiku to see the year out … dedicated to all my fellow ME sufferers …

 fragmented.ME xXx

Last Updated on 16/01/2022 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.

[give_form id="3285"]

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you can pay for a medical assessment by donating £187

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help me fund my preparation for rehabilitation treatments ...

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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

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Thank you very much !

help me fund my rehabilitation treatments ...

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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 !

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