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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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Lady Mar writes to Prof Wessely

Discussion in 'General ME/CFS News' started by Peter Kemp, Dec 4, 2012.

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  1. natasa778

    natasa778 Senior Member

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    Oh come on people, we know by now that personal stories do not count as evidence in IVI's world.

    Highly offensive.
     
  2. Holmsey

    Holmsey Senior Member

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    But Bob, there is a serious point to what IVI has said, patients are not somehow separate from their illness. Would you not blame a heart or liver diseased patient who continued to smoke for being irresponsible. What about an alcoholic who after being given a liver transplant continues to drink until they need another, I can think of at least one sportsman who did just that. What about someone who is life threateningly obese but refuses to adopt the suggested life style changes deemed to be his only chance at life.

    In ME/CFS there's clear evidence that stress effects our condition, in fact I doubt there's an illness known that stress doesn't, and yet many of us would refuse CBT as an inappropriate intervention when in fact it's one useful purpose is to provide techniques for stress reduction.
     
  3. Holmsey

    Holmsey Senior Member

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    Evidence is objective, stories are subjective.
     
  4. alex3619

    alex3619 Senior Member

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    Hi Holmsey, yes, older CBT and even CBT as generally practiced is great for dealing with stress (though I think there are better ways). I have done it myself. CBT being used in psychogenic treatment of CFS and ME is something else entirely with the same name. It uses similar techniques, but in a very different way with a very different goal. It has failed, yet its the treatment that is primarily on offer in the UK, along with GET which has also failed.

    Confusing the two or more uses of CBT and claiming success in one use implies the other should be accepted is irrational.

    Bye, Alex
     
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  5. Bob

    Bob

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    I don't see how you can come to a firm conclusion that "there's not direct link between neglect and a psychological view of illness." You argument doesn't hold. Just because neglect is evident in other diseases, doesn't mean that the psychological view of CFS has not made the situation worse for CFS/ME patients.

    Personally, I don't really care if there is dishonesty involved. All I'm interested in is getting the situation rectified.
    I'm sympathetic to the argument that Wessely & co have simply provided the establishment (doctors, government, etc.) what they want to hear, but, IMO, we do need to challenge the psychiatrists (as well as challenge the politicians and other decision makers) because the psychiatrist provide the evidence that allows others to make bad decisions.

    Actually, I was referring to other types of arguments put forward by members of this forum, in which they (perhaps unknowingly), undermine patients, and place blame on patients.

    I'm sure you didn't mean it in this way, Holmsey, but one such example, of (perhaps unknowingly) placing blame on patients is as follows:
    Perhaps you make a valid point, but we have to be careful about how we phrase things, if we are to avoid being mis-interpreted, or upsetting people.

    When this sort of assertion is continuously repeated, as it has been on this forum, the subtle message can potentially have a rather undermining negative effect on people, if not worded very carefully and sensitively, in a more positive way.

    Patients have enough on their plates without being burdened with any suggestions that they are not doing successful enough advocacy, etc, to get their illness taken seriously.

    How people interact with their communities and the people in their lives can have a direct bearing on mental health. There's no doubt about that.
    If a doctor were to treat a patient dismissively, or tell them to 'pull themselves together' etc., (or worse), and refuses to offer compassion, care and assistance, when the patient is desperate for help and care, and at rock-bottom, then of course this can have potentially devastating consequences.

    I have previously shared my own experiences of getting nothing more than a shrug of the shoulders when I first became ill, and how it affected me. No information was offered, no care was offered, no investigation was offered, etc.

    'Neglect' is a flexible word, and has many different guises in many difference situations.

    Actually, I think we can fault someone if they are ignorant, if they are in a position of responsibility, and their ignorance has a direct deleterious affect on someone life.


    (edited after posting to improve.)
     
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  6. Bob

    Bob

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    Hmm, I'd be very interested to see this 'clear evidence', re CFS/ME, if you have it to hand.

    The PACE and FINE Trials demonstrate that CBT is not a helpful intervention for reducing objectively-measured disability, and for improving other objective outcomes, such as employment hours and benefits claims.
    For the self-reported (subjective) primary outcomes (which were subject to bias), an average of 13% of PACE Trial participants reached the threshold for a minimal improvement, after treatment with CBT/GET.
    16% of participants said that they found CBT/GET 'helpful'.
    So I think we should be aware that CBT has very limited benefits, but a minority of CFS patients might find it helpful.

    And we have to be careful what we mean by "CBT", and what type of CBT is being offered to ME/CFS patients. Do we mean the type of CBT that is designed to address 'fear of activity' and the 'maladaptive illness-beliefs' that are alleged to cause CFS, or do we mean the type of CBT designed to address other issues, such as stress or depression? The former type of CBT has now been discredited by the PACE and FINE Trials.
     
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  7. Holmsey

    Holmsey Senior Member

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    Hi Alex, I wasn't making a defence for CBT practiced in either fashion, I was simply trying to establish as best I could that as patients we can't just put all the responsibility for getting well onto someone else.

    In some cases saying 'make me better' is like saying 'make me taller', that happens to be the case for us, the real frustration here seems to be that not enough has been done to get to the point where something can be done, but rather than blame politicians or concentrate on becoming better advocates we go around in circles worrying about what was done in the past and what an injustice this or that was. As a few people have now noted, SW is an irrelevance, the Psyc's are an irrelevance, at least if all you're interested in is getting better.
     
  8. Bob

    Bob

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    Not true. You can have subjective or objective evidence.

    For example, the PACE Trial's (self-reported) primary outcomes were based entirely on subjective evidence, which is why the primary outcomes are potentially biased.

    Also, I don't think it's helpful dismissing the first-hand experiences of the entire forum membership, as simply being 'stories'.

    Actually, it's a bit disrespectful.

    If the medical profession, and the psychological proponents, listened to patients more, then we would not have this level of disconnect between patients and the medical establishment, that we have been discussing.
     
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  9. alex3619

    alex3619 Senior Member

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    Hi Holmsey, from patient perspective I agree with you entirely. From a political perspective I am not sure this is a good idea. We do have a responsibility for how we respond. However if the authorities keep telling us to only do psych, to not research other things, that is a problem. Its one we can overcome, but many fall into the trap as other choices simply are not available, or they are not made aware they are available.

    There are many levels at which these issues can be dealt with. The politics does matter. As I see it, politics is currently a brake on research and effective treatment. Its not the treatment itself, but it determines in part the rate at which the science can deliver treatments, and then the health services can deliver them.

    So for a given individual the political stuff is usually irrelevant. For us all, collectively, it is however important.

    Bye, Alex
     
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  10. Bob

    Bob

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    Why are you suggesting that some of us don't try to improve our lives the best we can?

    I don't know if you are aware, Holmsey, but some of your recent posts (including the following post) have come across as deeply disrespectful, and patronising.

    As you say, not everyone has said that SW is an irrelevance. It is not an opinion shared by everyone.

    In general, I think you're missing the point of many of the discussions, Holmsey.
    This happens to be a Wessely discussion thread, and some of us think that the Wessely school's output is important to our lives, and other CFS patients' lives.
    But that doesn't mean that anyone is obsessing about him.

    Personally, I absolutely don't agree that SW & co are irrelevant, especially in terms of our own personal health.
    If I did agree that the Wessely school is an irrelevance, then I wouldn't be posting on this thread.
    But I do think it's essential to focus on their output, rather than on personalities.

    Again, you seem to be accusing of patients of not wanting to get better, because the have some sort of obsession about Wessely. This is a very worrying accusation.

    May I suggest that if you are not interested in Wessely & co, and their research, that you just don't go to threads that have 'Wessely' in the title? And let those who are interested in discussing the psycho-social research, continue to do so, without being accused of all sorts.
     
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  11. Holmsey

    Holmsey Senior Member

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    Isn't that a double negative, I say you can't make that conclusion and then you say I can't make the conclusion that you can't make the conclusion...I got lost somewhere, so you're saying you agree with the earlier leap but not with my suggesting that it's a leap.



    I disagree, it's government we need to challenge the most, research will take care of the Psyc's, as you say they're providing 'evidence' and only counter evidence will thwart that. Only Government can give us what we want, not the Psyc's (IMO).

    There are a great many here who get quite heated and take upon themselves things which neither concern nor effect them, like SW getting an award or SW getting a Knighthood, whether they realise it or not they choose to negatively effect themselves. Brining focus to that, in a compassionate way, can surely only liberate them from unnecessary suffering. Great thing to remember is that we own hate, we own anger, it doesn't belong to it's focus, they just go off to sleep mainly oblivious while In general the owner spends sleepless hours tormenting themselves at a perceived injustice that rarely has any real effect on their lives.

    I don't doubt it, my point was aimed at the earlier mail, I had more to say but I've deleted it, given both of us agree that consideration of others is paramount I think we should dispense with any more talk on this particular subject. I hope you understand and agree.


    Of course we can, whether we are morally right to do so is another subjective stand. Imagine landing on another planet, a few feet away you see a magnificent flower and step toward it, latter you find you just killed 2.5 billion sentient beings with that one foot fall, while I'm sure you would be devastated wouldn't you say in your defence 'I didn't know!'.

    Anyway, past bed time, speak again tomorrow.
     
  12. notinfinite

    notinfinite Guest

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    I am unsure as to the motive behind the suggestion proffered that I should not pursue, in any direction I choose, my belief that SW is central to many of the problems encountered by people with ME and that he is unworthy of spending my money (via taxation) for his research using his illness beliefs dogma. I have read nothing in this thread to alter my view.

    Whether the treatment(s) be the pointless use of CBT or the potentially dangerous GET or psychiatric drugs, SW is as capable of imposing dangerous iatrogenic treatments as any other shrink, it’s just that these treatments stem from his research (along with his cohorts).

    I’ve done all three psychiatry suggestions, the drugs and the GET damaged me, I have no idea whether the CBT did anything, I don’t know how I could measure that. I do know the drugs are disgusting, their side effects, very serious withdrawal issues and the look on every NHS tosspot Doctor’s face when they learned I was on a low dose antidepressant (which I might add was being administered on the suggestion that it would aid sleep pattern and pain relief) is something only I can know and live with. As for the GET, the relapse lasted months and I wondered if I would get through it.

    It is his problem if he feels misunderstood or is bothered by imaginary death threats or believes he is mis-quoted. I do not believe that keeping quiet and engaging with psychiatry is the way forward – it has not benefited us thus far and there is no glimmer on the horizon that it ever can help us. History shows that psychiatry is littered with casualties – millions of them.

    Defending SW in any shape or form should be left to SW and his lawyer.
     
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  13. akrasia

    akrasia Senior Member

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    "I've had patients who met post-traumatic stress disorder criteria . . . where their trauma was their interaction with their physician around this illness. They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD." - Nancy Klimas, M.D., Miami Herald, March 24, 2009
     
  14. ukxmrv

    ukxmrv Senior Member

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    Having visited patients with CFS and ME who have been committed to UK Psychiatric hospitals I have yet to meet one who came out better than they went in. In all the cases I have been involved with and followed patients have been harmed by either the drugs, the treatment regime or been bullied/attacked by other patients there.

    Anyone who thinks that their local locked psychiatric ward would be a good place for a PWME should visit there and report back to us after that visit.

    I agree with Nancy Klimas about the possible PTSD. A PWME who has their door knocked down by police, is forcibly removed from their home and then forced against their will into a tiny room in a hospital that refuses to accept that they have a physical illness (even something like POTS) could be badly traumatised from that experience both mentally and physically.
     
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  15. alex3619

    alex3619 Senior Member

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    I know of cases where this kind of treatment was threatened as a means of coersion in the UK, and no I will not mention names. That is enough to induce fear and perhaps trauma.
     
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  16. Bob

    Bob

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    I've edited some of my recent posts, after re-reading, because I realised that they were a little demeaning to both myself and other patients.
    I found myself needlessly defending patients, saying that, of course, CFS patients do try to improve their lives, the best they can, when they can.
    But as this is so blindingly obvious, it seemed demeaning to even have to say it, and I thought I should delete it.
    I also found myself pointing out that, just because we are discussing Simon Wessely on a thread with 'Wessely' in the title, doesn't mean that anyone is taking an unhealthy interest in Simon Wessely or causing harm to their health. Again, this is obvious, and shouldn't need pointing out.

    I think the posts, that I was responding to, say more about the poster than any CFS patients.
     
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  17. Valentijn

    Valentijn Activity Level: 3

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    Simon Wessely and other psychological proponents very strongly discourage investigation of patients on an individual basis (see quotes below), and it's rather inevitable that such a message will be translated by many doctors and most politicians to mean that the perpetuation of symptoms is not biological (aside from deconditioning) and that biological research is futile.

    In the process of touting their BPS theories, they use rather derisive descriptions of any competing theories held by misguided patients and radical internet forum members :ninja:. Furthermore, many papers advancing a BPS view spend more time tearing down competing theories than supporting their own theories. Anyone reading some of these papers will reach the conclusion obviously intended by the authors - although etiology is uncertain and probably includes viral infection, people with ME/CFS are no longer physiologically sick by the time they go to get their CBT.

    One guide written by a council of "experts" in the Netherlands for a government body went a bit further, saying it would be pointless to waste money looking for a cause. Wessely does not dare to be so blatant, at least not that I have seen, but much of his work carries the same message.


    Not only is physical investigation and treatment of patients pointless (beyond the basic tests ruling out organic/non-CFS disease), it might cause us harm! It might interfere with our ability to be brainwashed back into good health! We might somatize even more than we do already! We might get inappropriately concerned about the abnormal results that frequently turn up! Magnesium and fish oil may bankrupt and distract us!

    They make it sound like anyone even considering a research trial involving something other than CBT, GET, and/or antidepressants seriously risks turning us into irreversibly somatizing corpses. And I have little doubt that that affects the willingness of various institutions to engage in biological studies of ME/CFS patients.
     
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  18. Holmsey

    Holmsey Senior Member

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    I don't, but I've absolutely no doubt I could find them. But lets look at it another way.
    If you are in a position to argue that none of your symptoms are effected by physical stress then you would have no reason to decline GET, at worst it's just going to take up your time.
    In a similar way, if you argue that mental or emotional stress doesn't exacerbate your symptoms then you are unlikely to ever win a clinical argument around congitive difficulties associated with your illness.
    And finally, if you argue that the stress of infection does not in any way change the symptomology of your condition then you add weight to the argument that it has neither a viral nor immunological component.

    In all walks of life from engineering to programming we test systems by stessing them, how they respond to those stesses identifies their weeknesses.

    I think when we're answering each others mails we should avoid disagreeing simply because we've disagreed in the past. In this instance I clearly pointed to 'the one benefit off' in order to make a specific point which was unrelated to CBT itself, I did not make an argument for CBT.

    [/quote]
    Yes, this was also raised in an earlier mail, in answering that I made the same point, my comment regarding CFS was by way of demonstrating patient responsibility, the notion that we simply can't say, 'just fix me, I don't like you, don't trust you but it's your responsibility to fix me whether I co-operate or not'.

    Cheers,
     
  19. alex3619

    alex3619 Senior Member

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    Hi Holmsey, I agree that the physical stressors you list are all going to exacerbate ME. However, and this is important, none of them are the kinds of stressors that CBT will help.

    The logical flaw here is the same one that I see in many BPS papers on ME and CFS. The meaning of the word vascillates with context, and its presumed that if something is right with one meaning of the word it is right with the others, or all of them. This is not the case. Reason/logic is bound to the meaning of the word, not the word itself.

    Stress is a nebulous word. Psychobabble is full of nebulous words that mean all sorts of things in different contexts, even in the same papers sometimes.

    Stress in a psychological sense is really neurological stressors in combination with hormonal stressors. We are stressed when the normone demands are too high and neurological activation is too intense. Treatments like CBT and mindfulness etc. can help with that, by calming the physiological and neurological states. They can also assist by reducing the brain response to stressors, though this is much more difficult and probably more true of mindfulness than CBT so far as I am aware.

    Cognitive demand is not affected in us by these treatments to the best of our knowledge. Its simply not been tested. They focus on fatigue typically. It will also not help us with infection, thats driven primarily by immunological issues. Similarly it will not help us with physical exercise. It might help us reduce the stressors from the psychological response to exercise, cognitive demand or immunological challenge, but that is likely to be a seriously minor component - its only in their unproven hypotheses that this component has any substantial impact.

    So I reject your argument, Holmsey.

    In psychobabble they make true statements in one interpretation of the text, that are palpably false in another. They vascillate between meanings. For this reason they love to use deliberately ambiguous words, or to use words that have very special meanings that others might not realize are different from the usual meaning. "Fatigue", "functional', "normal", "recovery", "evidence-based", even "stress" ... these are just a few. I hope to make a comprehensive list with examples over time. Maybe later this year I will blog on this, though it is more likely to be in a year or two, this year is looking too full as it is, and this will be a lot of work.

    They also revel in these ambiguous word uses. Why do you think they keep coming up with new innocuous sounding names for psychosomatic disease and psychogenic causation? Somatization? Functional Somatic disorders, or Somatic Symptom Disorder? These don't mean what you would expect if you were a member of the general public who had not researched it. It implicitly involves misleading patients. Papers have been written about how wonderful it is to do this, its obviously :aghhh: in the best interest of patients.

    Bye, Alex
     
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  20. Holmsey

    Holmsey Senior Member

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    You are as you say entitled to pursue you beleifs in any direction you choose, whether or not that direction proves usefull to you individually or the advocacy around our illness in general can only be judged against your intended goals.
    With regards to SW and treatments. SW didn't adopt those treatments, the NHS did, politicians did. SW does not dispense those treatments alone, clinicians do, clinicians which we must hope in the main possess more medical knowledge than most of us. The issue is that we've lost / are loosing the rational argument around our illness, or if you like not us, but the biomechanical lobby within the scientific community. That the Psyc lobby's argument for whatever reason has been accepted over the alternate one is only the Psyc's fault if you can prove dishonesty on their part, i.e. that they do not profoundly beleive their own rhetoric and I see continuing evidence that they are entirely convinced.

    There isn't a cornucopia of treatment options out there, and the Psyc's aren't the only ones touting low level anti-depressant drugs to assist with pain and sleep, I was finally convinced to go down this route by Dr. Sarah Myhill's clinic, I'd refused my own GP even though his motives were based on exactly the same understanding, that it was not for depression but to aid sleep and pain symtoms. You indicate that withdrawal is a bitch, they're trialling Rituximab for our illness, that's one serious drug.

    I'm not sure we've ever kept quiet or engaged with psychiatry so I'm unable to follow your argument that you have evidence this hasn't worked. As to the assertion that it's SW's problem re. death threats and miss-quotes, my only comment on that is that the positioin of 'society has a duty of care towards me' is irreconcilable with 'but I don't have to conform to societal norms because somehow I'm a special case'.

    By this argument then, we are all on our own or do you beleive we should have societal rights that SW does not. All law all protocol is the product of how we collectively want to be treated, is it not?
     
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