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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Negative publicity on PWME - the motive?

Discussion in 'General ME/CFS News' started by currer, Sep 27, 2012.

  1. Enid

    Enid Senior Member

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    Well it is indeed part of it.
  2. alex3619

    alex3619 Senior Member

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    Psychiatry, in the whole, does produce much benefit. Subsections of psychiatry such as psychosomatic medicine are a major exception. It has been observed by at least some psychosomatic psychiatrists that new psychiatrists are avoiding the psychosomatic subdiscipline.

    As I said, psychiatry on the main has some benefit in treating or assisting. There is very little in the way of cures however. The cure rate? Approaching zero. This is because the science is lacking in my view, and that is in part because standard scientific methods which they have adopted are unsuitable for such complex multi-layered problems. I am working on proposals in relation to this, and others are too, including altering the whole peer review and publication processes, methodologies, etc.

    When psychiatry works its usually a stopgap measure. When psychiatry fails it can be damaging. The failure of the past are not important except they give us clues to the failures of the present. From several perspective in my analysis, not one, the modern failures are the same as the old ones in terms of structural and systemic issues in psychiatry. They learnt not to do the things that don't work but never fixed the system so it does not happen again. In a way this is a lot like modern economics where the systems that lead to the recent economic crises are not only still in place but are being reinforced. This is both irrational and dangerous. What does it take for people to learn? Psychiatry is structured a lot more like a religion than a science, and an obsolete pagan religion at that, or at least that is one of my suspicions I am investigating.

    My arguments on the whole are aimed at psychosomatic medicine, not psychiatry more broadly, though this necessarily includes the entire biopsychosocial movement given that it was originally established to promote psychosomatic medicine. It still does but the model (if it is a model, thats widely disputed) has been broadened substantially. I think BPS can be fixed, which is more than I can say for modern psychosomatic medicine. The original research agenda of psychosomatic medicine is however still valid - thought, attitude, behaviour and disease do interact, its just not as simplistically causal as many are claiming in current psychosomatic medicine.

    As for the US health market, simplistic analogies of how it works are insufficient to the task.

    Bye, Alex
  3. Firestormm

    Firestormm Guest

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    Cheers. I hadn't checked on that blog for some time. Keep forgetting. Shall peruse later :thumbsup:
  4. Enid

    Enid Senior Member

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    I agree that is provides great assistance in acknowledging and aiding "mental illness" alex - that is a whole range of biomedical pathologies - not "in your mind" - but in the brain. Again the brain. And very sad I am too having seen the suffering of eg.Altzheimers - nothing to do with psychology/psychiatry.There is a fundamental problem with the psyches - their lack of real medical knowledge of the underlying pathologies - which if more might be able to aid better. As a member once said here - gods of the gaps.
  5. Valentijn

    Valentijn Activity Level: 3

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    The person you were quoting (and everyone else, as far as I've seen), never claimed that. In fact, they are specifically attacking certain theories and applications of treatments in the realm of psychiatry, and you are the one that persistently equates that to attacking the entire discipline.

    Neither the bureaucratic nor the commercial models excuse the unscientific behavior displayed by the psychiatrists that are promoting those theories, nor the tolerance of that behavior.
    alex3619, natasa778 and Enid like this.
  6. natasa778

    natasa778 Senior Member

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    Sado maso way of advocacy!? Hmmmm that is a first .... I guess not many ME patients are into shiny things of leather, but then again you might be able to gather a small but very devoted group of followers if you persist. But can a gimp really make a good advocate ;)
  7. Valentijn

    Valentijn Activity Level: 3

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    I disagree that we should see psychiatric intervention as a part of ME/CFS treatment. The majority of ME/CFS patients do not have psychiatric problems, according to your own statistics, and it is not a central aspect of the disease.

    It makes no more sense to incorporate psychiatrists into our treatment by default than it would to do so for diabetes or cancer patients.
    Min likes this.
  8. ukxmrv

    ukxmrv Senior Member

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    Quote taken from “The New Machiavelli: The Art of Politics in Business” 1999

    Dealing with the media:

    “Another option is for the businessperson to learn the art of dealing with the media, using all the tricks that go with that trade – such as the false defeat: when a person seems to lose, in order to gain public sympathy, or the false triumph: where a person seems to win in order to appear strong – thus giving credibility to any number of dubious propositions that person may wish to make in the future. Neither of these ploys are examples of the use of true facts, rather of false facts given to the media to chew on, much as a dog chews on a bone. Another useful ploy is the false accusation. First, create a situation where you are wrongly accused. Then, at a convenient moment, arrange for the false accusation to be shown to be false beyond all doubt. Those who have made accusations against both the company and its management become discredited. Further accusations will then be treated with great suspicion. Always remember that people’s memories are very frail, remembering only both the high spots and the lows of a person’s career, and then seldom remembering accurately. People believe in the facts that it suits them to believe.” p176.
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  9. alex3619

    alex3619 Senior Member

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    Hi ukxmrv, exactly. I am a fan of the original Machiavelli writings. With respect to the last tactic, the spin is about selected instances but the implication is that its about a whole lot more. So if one person is inappropriately critical, then all criticism is inappropriate. If one person has made threats then a whole lot have, they are militant radicals. However it goes the other way too. If one psychiatrist is deeply manipulating the system, then all psychiatrists are deeply manipulating the system. Use of such arguments are based on a fallacy. If some, then all.

    I suspect the counter move is to call them on it, as publically and widely as we can. What evidence do they have for groups of miltant advocates (by which they probably mean communities like us)? What evidence do they have that we are militant? What evidence do they have that we are attacking them rather than justifyingly criticizing them. Acknowledge that there are a lot of very unhappy, fearful or angry patients, and ask why this is so. What have the psychiatrists done to provoke that? Then follow-up with our side of the story.

    Don't attack motives. Attack claims, supposed facts and reasoning. Further, frame the claims as questionable, provide counter-facts and show the reasoning is fallacious.

    Demonstrate their spin, repeatedly and publically. The Countess of Mar did that in UK parliament. There is not evidence of substantial benefit from CBT/GET in the PACE trial. It was a waste of more than five million pounds. This in a study that was spun by various sources as having a high recovery rate when the implications from the published data suggests the recovery rate appears to be low or zero.

    Attacking individuals, especially motives which are impossible to prove, is pointless. By all means name those individuals when you state their claims and show their claims are irrational or counter-factual.

    Reframe the debate. GET is good? Explain the test-retest (Stevens) protocol and the physiological changes. Ask which of their studies tracked patients who have this (and so we supect have ME) and shown there is no such detrimental response from GET using the Gold Standard test-retest procedure (its based on one of the most established standard tests in exercise physiology). How can they be sure that subjective questionaires reflect the actualy physiological picture in this atypical group. When are they planning to use test-retest protocols? Point out that in one case that was discussed publically by Staci Stevens a patient did indeed do more and more exercise, restructured her life to do so, a "successful" example of GET. The result? A decline in physical fitness.

    When they imply our FOI requests are inappropriate in some way, don't call them names. Do ask them why they want to suppress free speech and transparency in science.

    We need a repository of claims and rebuttals. Then we can reissue the rebuttals every time the irrational claims are made.

    Bye, Alex
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  10. taniaaust1

    taniaaust1 Senior Member

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    Psychologists could have a useful role in ME/CFS if they were properly aware of this illness and the issues it causes, they'd be actually very useful then but unfortunately right now cause they dont understand this illness they often do more harm then good.

    A ME/CFS patient has more life changes to get their heads around and adjust too then a diabetes patient has thou many of us need to stay on restrictive diets due to food issues.. we have FAR more issues to get ourselves to be okay about.. so many more triggers which make us worst which we need to accept. Even a cancer patient, isnt usually struggling to deal day by day with daily life as often they are quite capable and able to lead fairly okay lives till closer to the end.

    Psychologists could be very useful to those patients who are in ME/CFS denial but who need to come to terms fast with their illness before they crash to levels they cant get out of. (Im thinking of my sister when I say that..she's currently in denial of her illness and at huge risk of making herself much worst).

    Pacing.. everyone is brought up being told exercise is good for you. Its very hard for new ME/CFS patients to restrict their activities like they need to do and to stop doing things they may like but may need to stop.. that's another area the right kind of psychology and counselling could be helping ME/CFS patients with. Emotional support with dealing with all the life losses.

    Learning how to say no.. psychology for learning to do so and how to assert yourself when you need to say NO to others.. is an important thing for a ME/CFS patient to be able to do to protect their own health and well being.

    Learning to value oneself and all which one can manage to do even the small things is very important when it comes to this illness

    I personally think psychology could pay a very helpful role if the psychologist knew enough and this illness. .. but psych drugs being pushed down peoples throats due to misconceptions of depression.. that is a real issue and of cause the lack of understanding of this illness is a HUGE issue.

    I myself do have a great psychologist who is good with this illness. She's helped me learn how to stand up for myself better, provided validation for me when needed etc etc
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  11. taniaaust1

    taniaaust1 Senior Member

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    Ive always wondered (thou I doubt but who knows) if Wessely has sent any death threats to himself or purposely had others do that for that very reason...Ive always thought that could be a good tactic for him to use seeing he gets a kick out of upsetting us and making us look bad.. it would be an excellant way for him to create disharmony among ME/CFS people. (I often put my head in the place of what a very smart bad person would do and come up with all kinds of strange ideas how those with ME/CFS could be made to look really bad if I person wanted us to look bad).

    Ive also wondered on two separate occassions throu the years when Ive been on ME/CFS forums.. if a person was actually planted in a forum (eg paid to do this) to stir up trouble and make ME/CFS people look very mentally unstable. (im sure ive come across a very very smart "fake" ME/CFS person who just made us look very bad before..fortunately thou havent noticed anything like that for years).

    Not all people/groups play "nice" and some may play dirty tactics to achieve their aims. All we can say for sure thou is there certainly has been some purposeful deception which has gone on at times esp when it comes to studies. How much dirtier will some play?
    Min likes this.
  12. taniaaust1

    taniaaust1 Senior Member

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    So very true.

    There is so much work which needs to be done so all of us can advocate better. Part of the reason I think many arent advocating is that its just all too hard. People dont know where to find things and its too hard to do the searching for links to prove what one is saying. I often dont rebutt things I see online or elsewhere for that very reason.
  13. user9876

    user9876 Senior Member

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    Its not just about threats I think there are many of these over generalisations from evidence in papers by psychiatrists (and probably in many other subjects). The problem comes when they quote a piece of evidence without specifying the context and quality and then draw grand conclusions. The really obvious examples are when a trial deals with mildly affected patients but they generalise the results to all with no attempt at providing an inference chain. Or they talk of a treatment such as GET or CBT in a generic fashion rather than as a specific protocol. I don't think they even realise how unscientific they are being.

    I think this is a good strategy. Motives are very hard to prove it is much better to look at actions, and activities. Even then we need to not take statements in iscolation but look at the sequence of reasoning that is presented showing the flaws in the arguments as they publish them.

    I think it is also important to attack the mindless regression modelling they keep doing. Too often this is done with no thought to selection of criteria being self confirming or issues of independance and error distributions.

    I do think there is milage in attacking institutions for lack of quality control and conformance to standards. So for example attacking Queen Marys for not ensuring a study that they were the sponsor for published results as set out in the protocol. I wonder if trying to get the MRC to say no new funding for institutions who fail to publish results as set out in the trial protocol would be a good idea. Especially since MPs are reported to be looking into drug companies failures to do this.

    I would again press on the point that they are failing to publish results in the form that they promised in the original trial protocol.

    I think this is a good idea but we need to take care that it is of good quality and doesn't just become a selection of out of context quotes.
  14. alex3619

    alex3619 Senior Member

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    Maybe there is value in using a process of claim, discussion, counter-claim and then discussion on the counter-claim? All in a thread? And then a master list which is just a list to such claims and counterclaims, no discussion?

    I too think we need to press on institutions for poor judgement, bad science, and failed ethical standards. However each such claim needs to be thoroughly researched first. Its not enough to make a claim, we have to be able to substantiate it before we begin. We do not have to prove it beyond all doubt though, particularly if we are making our claim a question: given the following information, fallacies and ethical choices and nonchoices (avoiding, passing the buck), how can these actions be justified? I wrote a blog on this some time ago.

    http://forums.phoenixrising.me/index.php?entries/the-blame-game-a-way-forward.1064/

    There are many fallacious arguments put forward in support of the Dysfunctional Belief Model. I think many of us could use psychological and psychiatric help, but how can we trust them when nearly all that most of the think about our illness is fallacious? To get appropriate psychological or psychiatric support we first need to debunk the nonscience. Only then can we begin to have trust in psychiatry.

    Bye, Alex
  15. Quilp

    Quilp Senior Member

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    [quote="alex3619, post: 313438, member: 786" There are many fallacious arguments put forward in support of the Dysfunctional Belief Model. I think many of us could use psychological and psychiatric help, but how can we trust them when nearly all that most of the think about our illness is fallacious? To get appropriate psychological or psychiatric support we first need to debunk the nonscience. Only then can we begin to have trust in psychiatry[/quote]

    Hello Alex ( my bolding )

    I don't share this premise, at least on a personal basis ( even allowing for trust and the debunking of nonscience )

    1) How many is many ?
    2) Who might be helped and why ?
    3) Why are some helped and not others ?
    4) To what extent might they be helped ? Can it be measured, or is everyone different ?
    5) I could go on

    When you have lost the power to cry, help will never come in a white coat.

    Perhaps this is a numbers game; and the ''many'' refers to those that are able to leave the house; able to withstand the journey; able to find a partner/friend as you navigate your way through uncharted territory; able to absorb the financial costs. If so, then please forgive me.

    When medicine has found a way to get me back on my feet, the psychiatrists are welcome to try and help me back into civvy street. Infact, I would welcome any attempts to further my progress. Until then.....

    We are all different, but in all sincerity I had no idea to what extent, until I became a member of PR.

    Kind regards, Mark
  16. alex3619

    alex3619 Senior Member

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    Hi Quilp, some of us have severe anxiety disorder, some are depressed, some become suicidal, and some need help just coping with all the symptoms and problems they cause - this doesn't apply to every patient, and I am not aware of numbers that I consider reliable. My guess is the the percentage of patients who require help like this is probably around the same or a little more (given our pain, issues etc.) than the general population. These are a subset of us, and in no case has any causal link been found between these issues and ME. However with so many psychologists, psychiatrists and other doctors thinking ME might be psychiatric it becomes problematic at least for many of us to seek help. By and large these "professionals" do not have our trust, and if they started with our trust they often lose it very quickly. Furthermore this help should in many cases be delivered directly to patients who cannot travel. However in order for that help to manifest, the current very poor science has to be debunked and then additional and appropriate research needs to be done.

    Many drugs used in psychiatry are likely to be dangerous for an ME patient for example. Yet there is no research on this, or trying to understand it.

    Getting people back to work who are already in recovery is also a psychological specialty. Its not for all of us, but if someone has recovered enough to work then a little help might make things easier.

    One of the issues that psychiatry faces is it has adopted symptom lists for psychiatric disorders that are the same symptoms as in many purely physical disorders. I defy any doctor to objectively determine that these symptoms are psychiatric if the existing physical disorder has the same symptoms. So we get misdiagnosed, over-diagnosed and then this diagnosis is used to sideline the physical illness. This will be even more the case if CSSD gets through which I think it will - DSM-V is going to cause major problems.

    Like others who dispute with current psychiatry I am not anti-psychiatry, I am anti-bad-psychiatry, and I am against forcing hypothetical diagnoses and treatments on patients who don't want them. What I think we should be aware of though is something like an ME patient with severe anxiety as an example. Given the anxiety, and the desire to seek help, they face a problem. Many psychiatrists are likely to be unhelpful and are likely to presume the anxiety is the real cause of ME, or some underlying psychosomatic condition is causing both ME symptoms and anxiety. All this based on unproven theories. Once this gets into someones medical records it will distort further diagnoses and treatments for a long time to come, and may adversely effect insurance payouts. So what is the ME patient with additional anxiety to do? How can they trust any psychiatrist without doing a lot of research first? This is not how it should be. If an ME patient with anxiety wants treatment they should be able to get treatment for anxiety without it causing a major impact on their ME.

    Most importantly ME patients who do not need psychological help should never be coerced into getting it based on poor hypothetical psychiatric diagnoses, and that includes indirect coersion such as by facing threats of economic sanction from government or insurance companies. My argument was about people who want help not being able to reliably get help in the current state of medicine. We should not presume that everyone only has ME and no comorbid illness. The person who is likely to best be able to make that call is the patient.

    Bye, Alex
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  17. Jenny

    Jenny Senior Member

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    Hello Alex ( my bolding )

    I don't share this premise, at least on a personal basis ( even allowing for trust and the debunking of nonscience )

    1) How many is many ?
    2) Who might be helped and why ?
    3) Why are some helped and not others ?
    4) To what extent might they be helped ? Can it be measured, or is everyone different ?
    5) I could go on

    When you have lost the power to cry, help will never come in a white coat.

    Perhaps this is a numbers game; and the ''many'' refers to those that are able to leave the house; able to withstand the journey; able to find a partner/friend as you navigate your way through uncharted territory; able to absorb the financial costs. If so, then please forgive me.

    When medicine has found a way to get me back on my feet, the psychiatrists are welcome to try and help me back into civvy street. Infact, I would welcome any attempts to further my progress. Until then.....

    We are all different, but in all sincerity I had no idea to what extent, until I became a member of PR.

    Kind regards, Mark[/quote]

    Many is the time when in deepest despair about my illness I was desperate for the help of a skilled therapist or counselling psychologist just to be able to voice and explore my feelings. They don't wear white coats.:)

    Jenny
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  18. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I have no idea what your point is. Alex wrote “There are systemic problems pervading all of psychiatry” in a context that followed from Phoenix Down’s equation of psychiatry with crystal healing. Alex subsequently acknowledged that there are aspects of psychiatric care that are (at least contingently) valuable. But Alex’s overall presentation was of psychiatry ‘in crisis’ and of questionable validity, following seemingly without criticism, Phoenix Down’s and Nat asa’s disparaging posts. To be absolutely clear I have no problem with anyone criticising any area of medicine – I’d just like the criticism to have at least some reference from outside a purely M.E/CFS focus.
    Explanation is not excuse – it’s just what is. Expecting psychiatry as a profession or psychiatrists as individuals to act with greater moral rectitude than any other human or group of humans, is absurd. They like us are players in the system, and if we want change then we either have to achieve adjustment to the system (or more improbably) change the system. There’s more chance of getting change if you can recruit other players to your cause – including those you are currently in competition with.
    Whether you and I agree or not is irrelevant – it’s about what is happening at the service level that is at issue. The point about ‘majority’ is to misunderstand how services are delivered in optimised health services. The notion of a single ‘specialist’ with a ‘discrete’ patient list does not reflect clinic or hospital contracted services, where multi disciplinary teams and cross referral are becoming the norm.
    A case where – search before you type – would seem to apply:
    http://www.rcpsych.ac.uk/pdf/Liaison-psychiatry-faculty-report.pdf
    http://pb.rcpsych.org/content/32/12/461
    http://www.ghpjournal.com/article/S0163-8343(05)00064-2/abstract
    http://www.bmj.com/content/333/7558/65
    http://onlinelibrary.wiley.com/doi/10.1002/pon.1185/abstract
    http://www.bmj.com/content/330/7493/702
    http://www.beaumont.ie/index.jsp?p=272&n=373

    IVI
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  19. Quilp

    Quilp Senior Member

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    Many is the time when in deepest despair about my illness I was desperate for the help of a skilled therapist or counselling psychologist just to be able to voice and explore my feelings. They don't wear white coats.:)

    Jenny[/quote]

    ''We are all different, but in all sincerity I had no idea to what extent, until I became a member of PR''

    Hello Jenny, I hope you managed to find the help you needed.
  20. Firestormm

    Firestormm Guest

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    Thanks for the linkies dude. Only on the first - but it's interesting to read about Liaison Psychiatry and the estimated costs associated with long term conditions and co-morbid psychological needs.

    This I thought was an interesting basis upon which to stand the argument:

    Indeed, reading of the Medically Unexplained Symptoms sections was not insulting in the slightest. I mean my reaction at times might well be to say 'Well if you looked hard enough you'd bloody find something!' but that's not the reality given the confines of the system.

    Was also rather nice to see that ME/CFS wasn't used as the prime example anywhere in this document (for a change). Still, it is rather at odds - the terminology - as a 'long term condition' is generally recognised elsewhere as applicable to neurological conditions - which I have to say was something I always thought of as wrong.

    There are a great many conditions that persist even with 'biomedical' treatment and understanding. The impact of them on a person's quality of life is what is being considered as the driving force for psychological/psychiatric intervention.

    Of course - as ever - the proof (in terms of cost and more importantly patient outcomes - i.e. improved quality of life living with a disability) is in the pudding. Unfortunately, the cost of implementing this national strategy is - I predict - going to be considerably higher that this document suggests.

    Patients will need continuous help. They will need to 'dip in and out' of e.g. counselling. The cost of the PACE trial is testament to the investment required in e.g. CBT therapy to establish a rather less than impressive base-line.

    What is less certain with counselling - is outcome. It's not like a drug (well it is but I think less so) it is down to individual patient need. Within the NHS (based on personal experience) you will receive a course of intervention that max's out at six sessions.

    If you have a long term condition - ME - and you have specialists attached to your local hospital - you should be able to get help for longer or as and when it's needed. But everyone is different and they cannot predict patient need or outcome.

    Permit a facile example if I may:

    I have a headache. It persists. I take a pill. The headache is relieved. I believe it was the pill that did it and I can get on with my day.

    I have ME. I have a lot of symptoms that have resulted in my significant disablement. Some of these symptoms are recognised as being down to the ME. Some are recognised as being down to the effects of ME on my life. My daily toil. The impact of survival, The guilt, etc. etc.

    I want a pill that will relieve me of the ME. I expect that with that pill I will be better able to cope because my disability will be relieved. Unfortunately for me, there is no pill for ME. But there are pills for some of the symptoms - and I am on them.

    And yet in the meantime I must survive or kill myself. To help me survive I need to learn how to cope better with my disability and to cope better with what life throws at me whilst I feel unable to cope.

    Those aspects of living with this long term condition can be helped along the way by talking my problems through with a professional and learning coping mechanisms or management strategies (for want of batter terminology). If I decide at any given moment I don't want or need that help then I don't have to take it. But when I need it I want it to be there.

    It isn't a reflection of a lack in belief that my ME is less-real. It is an acknowledgement that the effects of my ME on my quality of life are significant.

    Unfortunately, according to the reports from some fellow patients and friends, not all practitioners are quite as 'on board' as I would expect them to be. And this expectation is shared by and large by their profession - and by NICE for that matter.

    Anyway, will work through the links. Appreciate it.
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