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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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Professor Simon Wessely says he is misunderstood

Discussion in 'General ME/CFS News' started by Daisymay, Nov 27, 2012.

  1. Stukindawski

    Stukindawski

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    I agree with these two lines in particular. I'd wager if you could rake over a couple decades worth of quotes of anyone, you'd find they contradict themselves. I know I would. The danger in looking petty and adversarial is that sense gets lost amidst it. I would criticise Wessely in the way that he places a preference in addressing lacklustre criticisms as opposed to the more robust questions there are to answer. Although you can understand to a point that if there are inaccuracies being circulated about you, your self-interest and vanity is motivated towards addressing them.

    I would like to see someone of reasonable status address Wessely or others like White or Sharpe, in a purely academic fashion.

    It's not that I'm not a little bit suspicious about their activities, it's just that I really don't care if someone buys them a billion dollar house if it means ME/CFS was cured tomorrow.

    Your quote about anger is right Barb, I think it is the biggest obstacle the ME/CFS community has had for sometime. Completely understandable, given the alienation and rejected suffering patients worldwide have had to endure, but it really has to be put behind us or harnessed for positive pursuits.


    Lastly I'd also like to point out, that defending Wessely or more widely the BPS model of ME/CFS aetiology is key to criticising them. It's not necessarily some heinous partisan act. It's a key tool in building better criticisms.
  2. Adamskitutu

    Adamskitutu *****

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    I don't think discarding history is the answer here. The quotes I'm seeing here are useful because they establish a pattern of belief and behaviour that leads us to understand why we are still seeing the same old beliefs, in a new dress. The historical evidence shows how the dress has changed over the years, yet the underlying petticoat is the same, though the rot has set into the fabric, which wasn't good quality in the first place.
    Jarod, Bob, maryb and 3 others like this.
  3. Valentijn

    Valentijn Activity Level: 3

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    Actually these older quotes, where he has been unusually candid due to circumstance, help put his vague BS from more recent publications into perspective. Yes, most of his quotes from published works are difficult to put into context - unless put into the context of the entire paper, which is not useful for illustrating his views in a accessible manner.

    Furthermore, these are statements he made to an advisory board of a government agency. If he now has different feelings, he could certainly retract those statements, as someone else has pointed out.

    And do you really think he's saying different things now, when sending private letters to government agencies? Or when talking to other psychobabblers? Or when giving lectures/presentations? Even back then he was saying very blunt things privately, but adding a little spin and vague language when ME groups were part of the audience.
    Marco, Bob, maryb and 2 others like this.
  4. barbc56

    barbc56 Senior Member

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    I have no idea about his private letters as I'm not a mind reader. I don't think any of us have that skill.

    Barb. C.:>)
  5. Valentijn

    Valentijn Activity Level: 3

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    One was released in the National Archives file. It's where some of the nastier statements came from.
  6. Holmsey

    Holmsey Senior Member

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    Yes, well said.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    WHy dont your recovered patients get on these forums and back you up??
    where are these recovered patients??
    Wildcat likes this.
  8. Firestormm

    Firestormm Guest

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    A damn fine point Heaps. What does happen when anyone says - for whatever reason - I am feeling a bit better? Or such and such intervention seems to be helping me? Or I am grateful for the support that I have received from my local ME service?

    I work as closely as I am able with my local support charity - and I can tell you that we received over 120 letters demanding that our Service not be closed. That's 120 letters from a membership of 200. Not bad when you consider some are very severe and some members are not even patients.

    Ok. This wasn't people saying 'give me GET' but these were and are people who value their local service provision and do not want it to end.

    And I have to say that I have seen some frankly shameful acts on forums when people say they are recovered or are feeling better. For whatever the reason. Shameful. Sometimes there is a distinct lack of support. Not always and it's not representative at all of all forums or posters but it happens.

    And again for the record - we are not defending Wessely! :)
    barbc56 likes this.
  9. Bob

    Bob

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    Of course patients want NHS services, and as much support as they can get.
    But if patients are told, by the medical profession, that CBT and GET are helpful, then they will take that at face value.
    Whereas, on the forums, we look at the scientific literature, and it tells us that CBT and GET are hardly helpful at all.

    I've no doubt that some people find the NHS services helpful.
    The NHS services do, at least, relieve isolation, and hopefully validate the illness experiences of the patients.

    The issue that I have is that patients and doctors are being massively over-sold CBT and GET.
    Both the FINE and PACE Trials were pretty conclusive.

    If patients were told that CBT and GET don't lead to a recovery, and that only a maximum of about 15% of patients can expect to find the therapies helpful, then I would find that much more acceptable.

    The NHS, NICE, the medical profession, doctors etc., should be clear that CBT and GET don't 'reverse' the illness (i.e. don't 'treat' CFS/ME.)

    I think that many of us are simply looking for the truth to be told, and for honesty and transparency. It's not much to ask for, or you wouldn't have thought so.

    And this is where the anger comes from. It's the massive ordeal that we face, just to try to get the authorities to acknowledge the truth. That's what it's all about.
    Shell, Marco, Wildcat and 5 others like this.
  10. alex3619

    alex3619 Senior Member

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    I see several issues here. First, they may be busy leading normal lives.

    Second, they may be intimidated ... recall how strongly it is discouraged to go to support forums.Recall all the negative claims of "extremism" on support forums. In any case quite a few of us on various forums might be highly sceptical of claims made by recovered patients, and those people might be aware of this.

    Third, most of them might have recovered anyway, and know it. The background recovery rate is likely to be much HIGHER than the claimed recovery rate from CBT/GET. I will address this in a few paras.

    Fourth, most of them might not have ME, and know it.The misdiagnosis rate has been cited as anywhere up to 70%. Even under Oxford CFS there appears to be a 40% misdiagnosis rate, and it could be argued that Oxford CFS is itself a misdiagnosis.

    Fifth, they might have said they were improved but in reality they were not. While quite a few tick options on forms to claim they are feeling improved, the objective evidence in every study that has collected it shows no improvement.

    Six, they might have relapsed.They might be embarassed to admit this, and might not even have told their treating doctor.

    Seven, they might have made no improvement. The claims made are subject to so many confounds and types of bias that almost none of it can be considered reliable.

    We know from the Dubbo studies and a few others that about ten pecent of patients with post viral fatigue go on to get CFS and presumably ME. What about the others? Post viral fatigue has a recovery rate from days to years, but the vast majority recover naturally. Is psychogenic medicine picking up on these, diagnosing them, watching them recover normally, then claiming cures? Thats potentially quackery if its happening. Its what quacks do. Remember snake oil?

    There are some issues though. I do not think the nature of post viral fatigue and CFS from these studies is properly clarified. Indeed, it might be that those in the Dubbo study just had a prolonged case of post viral fatigue. ME (and strongly defined CFS) is much more than just fatigue, and those symptoms were not adequately addressed.

    We cannot compel recovered patients from coming forward. I do not doubt there are more than a few recovered patients. I doubt their diagnosis and the nature of recovery. If someone does come forward we need to be very careful to not be hostile toward them, but at the same time to ask for information to clarify their situation.

    Bye, Alex

    PS Eight, they might be so desperate to have some success that they haven't come to terms with therapy having failed.
    Valentijn and Adamskitutu like this.
  11. Bob

    Bob

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    And it's not all about CBT/GET, of course, but the these therapies are symptomatic of the issues we face, re funding, and recognition etc. For years, patients have claimed that CFS/ME is biomedical, and for years we've battled to get that message accepted, and for the illness to be properly recognised for what it is. Wessely & co, have been central to promoting the psychiatric paradigm, and rejecting the biomedical model, and they are still saying that patients claim that CFS/ME is not 'psychiatric' just because of the stigma. But the PACE and FINE Trials have proved patients correct. Let's get that message out there, and let's not allow these people to propagate nonsense any longer. We can have a very simple message now: PACE and FINE have disproved the cognitive-behavioural hypothesis.
    Sam Carter and Wildcat like this.
  12. Enid

    Enid Senior Member

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    Vagueness seems to be their thing - have they got a clue - like shifting positions might overcome their lack of the grasp or understanding of the biomedical findings may help them escape their history.
    Valentijn likes this.
  13. Firestormm

    Firestormm Guest

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    Personally, and as I have said time and time again, I want to see more data gathered and analysed from local ME Services. This is what NICE talked about and this is what is missing. We don't even know how many people have a confirmed diagnosis for heaven's sake.

    What interventions there are from GPs, and from ME Services are not going to appeal to everyone. I dare say - am speculating in part - that for those who are not severely disabled, then knowing and seeing a medical specialist for their ME is enough every once and a while.

    If owing to expense, each patient is able on average to have 8 or 6 sessions with an Occupation Therapist or Psychologist or even Medical Specialist - then their experience will be different and their reported feelings of help different also.

    Outside of Clinical Trial, delivery of any healthcare is individual and different and cannot be compared to the reported outcomes of said Trial. Shit even Wessely said this on the extract I posted earlier on this thread - from that paper of yours Bob.

    You take from clinical delivery what you can. In the same way that you take from your next meeting with the GP what you can. There is not specific and direct treatment for our ME or a pill or a cure. If you 'suck it and see' and feel it isn't right for you - then hopefully someone else will find it more useful.

    What else is there? If certain practitioners are seen by patients (more than one) to be not 'getting it' or overselling their intervention - then patients should try and work together in liaising with the service provider and trying to see education improved.

    There is no guarantee that e.g. an aspirin will help someone let alone a therapeutic intervention. It isn't helpful to all and some practitioners are not especially helpful either.

    What else is there? What is it that people want? What do they (you) expect?

    In relation to the Cornwall service, the letters were actual letters - pretty rare in these times - and the people who have used or use the Service are very familiar with it's practitioners.

    Those practitioners are fully aware of what ME isn't. There is no preaching or indoctrination. But for some they will want more and I cannot see what more can be made available at the present time.

    Ensuring that people with ME are not also suffering from things that can be treated directly is important as is ensuring they do have the correct diagnosis. These sort of things can only happen if a Service is available and people engage with it.

    Does it matter to some who 'leads' the service? Or what medical discipline that person or person's have? I would suggest it does. How, then, can we hope to attract more e.g. immunologists and neurologists to our ME provisions without engaging with that provision?

    Bob, what you say in part I would agree with. People will always protest over a provision that is being withdrawn. There are no absolute or empirical measures on the ground with which to measure the efficacy of any one intervention - but then I would argue each person's experience is unique and a reflection of the personalisation that can and does occur.

    Our Service cannot (could not) manage the demand for it from local people with or wanting a diagnosis. The costs outran the provision prompting the review and effective suspension for 2012.

    Conservative estimates suggest 2,000 people in Cornwall might have ME. The service spec. could only handle 200 new referrals a year. It was overwhelmed! GPs wanted it. Patients wanted it. The Trust couldn't afford it and the PCT would not stomp up any more dosh putting the burden back on the contract holder i.e. the hospital trust - who procrastinated.

    What do you do? It's hard. I know people who haven't seen their GP for years because they are afraid of what he/she might say about the condition. If we do not pro-actively engage with GPs and service providers how do we move forward?

    It's wrong for people to feel neglected and to be left isolated and alone. Even if - in some people's view - clinical delivery does amount to little more than an aspirin and a sympathetic ear - that's better than nothing at all.

    Of course in respect of our Service I know it does amount to more than this. And if you happen to be on benefits then engaging with or being seen by such a service is arguably vital these days. And if through engagement there is a chance of improving your quality of life - then I'd suggest you'd be nuts not to engage and make use of any provision.

    Not all of us all the time can afford to be engaged or to liaise with the service providers - but some can. Not every region is organised to the extent that we might be in Cornwall - but some are and some are capable of being.

    Some counties and some if not many countries have NO provision. And least we forget, no every view is reflected by what is said on the internet - not by a long shot.
  14. Firestormm

    Firestormm Guest

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    Perhaps a timely comment from someone with severe ME posted on BS last night (following some hassle afforded to her on another blog):

    Again, an example, an experience, not necessarily representative of all our experiences and yes, it relates to what NICE would call 'activity management'. Just seemed timely, is all.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Thanks for posting, it seems to have helped her marginally and being as ill as she sounds marginally is alot i guess.
    also good to see how its helping. When one looks at the whole picture including physiological issues with cfs/me graded exercise etc is more a coping mechanism then a treatment or maybe a way to test the boundaries or helping with deconditioning??

    I think the way SW presents things is that we are not testing our limits or game to increase our activity, my own experience and what i have read of others experiences on PR here is that we do try to slowly increase our activity level when we can but we also know that when we are ill more then normal like in a crash, it makes us worse trying to increase our activity/function.

    I think most people with cfs/me would agree that some of these other therapies could be helpful to a certain degree and refined alot better then they are, but also we understand its not the be all and end all, i think thats what gets up everyones goat. The theory behind it all, false illness beliefs is a load of crap.

    Firestorm, it would be good to see how this person would improve if they did further infection/immune testing and treated her with the appropriate therapies for the dysfunctions found, maybe she could bath herself and care for herself. I feel sorry for her as i think there is so much more that can be done to help her.

    thanks again for posting.
    Whit and anniekim like this.
  16. Bob

    Bob

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    As the evidence shows, a small proportion of patients find CBT and GET useful.
    But the PACE and FINE trials have shown that CBT and GET clearly are not effective 'treatments'.
    Individual stories of improvements are always good to hear, and they are important, but they are not the same as the scientific evidence gathered from medical trials.
    The PACE and FINE trials provided scientific evidence.
    The reason that medical trials are carried out, is to place individual anecdotal reports of improvement into context.
    For example, in the PACE Trial, many patients improved, at least a little, over time without any therapies other than the control therapy (usual medical care.)
    Valentijn and anniekim like this.
  17. anniekim

    anniekim Senior Member

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    I know of someone severely affected who did a strict graded activity programme and she did make some small improvements, remained predominantly bedbound though and relapsed again to completely bedbound where she remains years on. So the effect wasn't long lasting or that significant in the scheme of things. As others have noted many naturally pace and it's important but is not a very effective treatment for most..
  18. user9876

    user9876 Senior Member

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    Its not just about the science showing an improvement. There is also an issue of quality control on the treatment. If it were a drug then there is quality control on the production line to ensure the drug is as intended with the right sized tablets to stop overdosing. Its much harder with therapies so one therapist might push someone to make very small increases but another might do damage by pushing too hard. One concern is around headlines suggesting GET is hugely sucessful this might encourage someone, say a GP, to try to do their own versions and push people too hard.

    A different concern is how does a therapist know how much to push someone when this information has not been recorded in trials.
    Wildcat, alex3619 and Bob like this.
  19. Whit

    Whit Senior Member

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    I agree. Being able to have the windows open and brush her hair is great, but it is in no way a cure, and is in no way evidence that GET is a cure which is what Wessley seems to assert. If CFS was caused by deconditioning, GET would be a cure. Plain and simple.

    I would like to see the psychobabblers get double blind tested with some non-CFS patients. Have them do a study on 7 groups of people, 5 with various other illnesses with known causes like HIV, etc, 1 group with "CFS" (or depression, depending on Wessley's definition of CFS, you know since he thinks it's all in the mind, he's clearly going to recruit patients that fit his theory, and likely most of his patients don't have CFS) and the last group healthy people.

    I would be willing to bet that even if CFS patients do benefit from GET, that all other groups would benefit much more than the CFS group (at least this would be the case if the CFS group were actually CFS patients). Healty people certainly benefit from GET. What do you think a personal trainer does?

    Any benefit that is received from CFS patients could also just be from having care for the first time in years. It sounds like this patient could have just benefited from having someone bath her and brush her hair and help her. She says she didn't have care for a long time. I would have to know more about the case and that patients situation to say more.

    From what I know about the GET studies, they seem like very bad science to me where studies are set up to prove a certain preconceived result, and then these results are further interpreted in a biased way.

    It would be like claiming that bad eating habits are to blame for CFS. Then you do a study where you recruit people who are tired and have bad eating habits (self fulfilling study because you are imposing your own definition of CFS on the study since the patients in the study have bad eating habits but not necessarily CFS) and feed them all locally grown, organic food prepared by a professional chef, and see how they do, and when they feel a bit better, you conclude that indeed, CFS is caused by bad eating habits.
    heapsreal and alex3619 like this.
  20. jonnyboy

    jonnyboy

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    Really beginning to realise how distorted the picture of ME is in many doctors minds, and probably down to Simon Wessely and his cronies.

    This happened the other day :-
    I got in touch with a mate over the phone, who I had not spoke to for a good couple of years. He had no idea I had been unwell during because until now I hadn't let him now.

    What was interesting was that he had also been diagnosed by his doctor with ME in the last year, but our symptoms are literally miles apart. For what its worth my friends refuted the diagnosis believing the doc to be wrong and didnt go back and carried on at work (just trying to take things easier). My friend believes his problems are just a mixture of work burnout and mild depression and he freely admitted this. Said he was working 12hr days for poor money on a training contract at a solicitors office, he isnt happy with where he is in life at the mo, and his tiredness in the evenings he purely put down to a combination of mild depression/work burnout. So at the moment he still works, and is fit enough to go running 2/3 times a week.

    I told him my situation, with primarily autonomic problems (I cant even sit upright for long), brain fog, neurological symptoms and fatigue too. Both agreed that our symptoms were nothing alike.

    But it really did hit home how utterly stupid this whole ME mess is in the UK, people being told they have ME when clearly they dont, and people like myself with clear problems getting no help whatsoever. If Wessely and his cronies manage to convince people like my mate they have cfs, its no wonder they actually believe their behavioural disorder theories are correct. Its a good job my friend made his own mind up, and realised he is was just overworking.
    Shell, Wildcat, DaiWelsh and 2 others like this.

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