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Wessely Says: Even if XMRV Causes ME, "There's Nothing We're Going to Do About it"

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by justinreilly, Mar 9, 2010.

  1. Koan

    Koan Be the change.

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    Here is the Wessely segment

    Duncan Jarvis: Chronic Fatigue Syndrome is confusing. It’s gone by various names in the past, the etiology is currently unknown and they’re aren’t any diagnostic tests or biomarkers for it. Various causal agents have been suggested in the past and a new one, XMRV, has been in the news recently.

    First we explain some background. I’m joined by Simon Wessely. Simon’s the Chair of the Dept. of Psychological Medicine at King’s College, London, and he also founded the first NHS unit to treat people with Chronic Fatigue Syndrome, and he’s also written extensively on it in the past.

    So, Simon, for a start, in your experience, how would you characterize Chronic Fatigue Syndrome?

    Simon Wessely: Well, I think it is much as you described. It is a controversial and rather difficult area of medicine. It’s certainly not new and, you know, the difficulty comes from the very things you’ve established, that this is defined on symptoms alone, on the history alone, where you have a characteristic history of someone with severe physical fatigue and fatiguability. In other words, it’s not just that they feel, you know, very tired all the time but physical effort makes them worse.

    And, they also have mental fatigue, and mental fatiguability, so mental fatigue also leaves them in a state of exhaustion. And, they have other symptoms as well such as muscle pain, ah mood change, sleep disturbance, they often gain weight and various other symptoms. So, it’s defined on symptoms alone which always makes it a difficult category for medicine along with many other similar disorders.

    DJ: The ME Association says that currently it affects about a quarter of a million people in the UK. Would you say that number is fairly accurate?

    SW: Well, it all comes down to definition. If you use a broad definition which includes, for example, also people who have co-morbid, you know, concurrent depression, anxiety, it’s probably commoner than that - maybe up to 1 to 2% of the population. If you go for a narrow definition, it comes down to about 0.2/0.3%. It’s a bit like blood pressure; it all depends on where you draw the line.

    DJ: Yes.

    SW: But the one thing we can say, is that this is certainly a definable illness in the population and it does represent a not inconsiderable burden in general practice and primary care.

    DJ: Yeah. Now it’s been in the news recently because of a potential cause that was put forward: this Xenotrophic Murine Leukemia Virus and related Virus, and we’ll be hearing more about that later, but there is a viral element to Chronic Fatigue Syndrome, isn’t there? Could you take us through that?

    SW: Yes, there certainly is. I mean, this has been known now for well over a hundred years. People can develop what were known as Post Infectious Fatigue Syndromes or Post Infectious Neurasthenia Syndromes after, not just viruses but, a host of other infective organisms - Typhoid for example, ah Bruscella and many other organisms seem to have the capacity to trigger a prolonged fatigue syndrome.

    And, if you look at nicely conducted longitudinal studies, for example, it’s very clear that certain, ah, viruses can do this more than others. Glandular Fever being the classic one and Glandular Fever, for reasons that still remain largely unknown, seems to be able to trigger more chronic fatigue and Chronic Fatigue Syndrome than most other infections.

    But, what I think was unusual here was, in given the heterogenaity of Chronic Fatigue Syndrome, and its somewhat blurred boundaries, the claim that they’d actually found THE cause in the vast majority of people they studied, was always rather implausible.

    DJ: Now it’s not the first time that A cause has been suggested and patients seem to tend to want to cling onto that. Do you know why that is?

    SW: It’s certainly not the first time that a single unitary cause has been suggested. Uhm, but, to be honest, I don’t think that’s the right way to look at this illness. I think it’s much more multifactorial in the same way that, you know, heart disease - having a heart attack - is the end product of a lot of things.

    I think for some people, however, any suggestion of a social or psychological component to the illness... there are some people who do find that very stigmatizing. And, really don’t like that at all, and would prefer there to be a single, unitary, neat, simple explanation. Uhm, preferably a viral or immunological cause like that. I’m afraid I think the world’s a bit more complicated than that.

    DJ: (laughs) Ok. So, if you’re a GP and a patient presents with CFS-like symptoms, what care’s to be done for them?

    SW: Well, the first thing to do is make sure you’ve got the right diagnosis and every year we pick up people, you know, who come along with looks like a chronic fatigue syndrome but when you look at it more closely there’s actually an alternative medical diagnosis. So, and of course, most GPs, most doctors, do that automatically, but nevertheless, it’s very, very important to stress: first of all, make sure you’ve got the right diagnosis.

    DJ: OK. And, what would the next step be?

    SW: Well, the next step then, you know... The model that we use at the moment, unsatisfactory though it may be, is that it’s a bit like being in a hit and run accident. You know, you’ve been hit by a car; we don’t need to know the number plate of the car that hit you in order to rehabilitate someone who’s been in a road traffic accident. Nor, when we’re dealing with CFS do we need to know precisely what virus it was that you had and when.

    Uhm, as researchers and academics, you know, we spend years investigating these things and it’s very interesting but it doesn’t actually affect treatment. And treatment, very similar in large areas of medicine is about rehabilitation.

    There are good and bad ways of managing this illness and this is now we start to look at all the secondary effects that have happened to you and a lot of people with CFS have got depressed, no question about it, and I don’t mind... that may upset people but that’s simply true. We also know that a lot of people who’ve had depression are more at risk for developing CFS. So, if people have got depression, let’s not ignore it; we’re going to treat that.

    Some people have also got themselves into very unhelpful patterns of activity. They do too much, get exhausted, then they do too little to recover.

    We’re going to look at sleep hygiene; can we improve sleep. We’re going to look at pain control. And, we’re going to look at this whole balance of rest, activity, sleep, energy and exercise. We’re not going to lie you down on the couch and talk about your mother, ‘cause it’s entirely irrelevant.

    We’re not going to go doing more and more tests to find out what was the virus because, frankly, even if we found it, there’s nothing we’re going to do about it. We’re gonna... in the business of rehabilitation.

    DJ: So, it’s very pragmatic approach to...

    SW: It is a very pragmatic approach, that’s absolutely right. And, it may well be, in a hundred years time, people look back and laugh at our pathetic and puny approaches to this illness - sobeit. But, it’s an approach that works. Uhm. It’s about improving control of illness; it’s about improving management; it’s about improving quality of life; ahh, improving the control of symptoms and many people will do very well on this approach.

    DJ: Ok. So, you mentioned there that people sometimes do get upset by having a psychological therapy approach to treatment. Presumably there’s some evidence behind what you do.

    SW: Yes, I mean, funny enough, I didn’t mention the word: psychological therapy unless you mean by the management of depression, and that can sometimes be a very biological approach.

    It’s a rehabilitative approach that certainly, of course, takes into account social and psychological factors for sure but it’s the same approach that’s often used to help cancer patients, Rheumatoid Arthritis patients, any patients with chronic diseases are helped by this approach. I mean, the technical jargon term - it’s been bandied a lot around - it’s Cognitive Behaviour Therapy (CBT) but I do emphasize that this shouldn’t be seen as the Viennese psychiatrist with the beard lying you on the couch and asking you about your first few days of life.

    It’s not about that at all and it’s actually very pragmatic and at no time at all will anyone doing this seek to convince a patience, “Oh no, you didn’t have ME after all.” Because they do. And, at no time at all should anyone seek to convince them that this is a psychological disorder because, first of all those terms are pretty meaningless in this day and age and, second, it may well not be.

    You know, we're in the era of the brain, we think the causes lie in the brain and we don’t think they lie in the muscles or in the immune system, I should say that, and we do think they lie in the brain. And, these words start to become meaningless.

    What we know, from the studies, is for people to get better, they don’t have to change their views of what’s wrong with them, they don’t have to alter... you know, we don’t have to get into these kinds of cartesian battles, that no one ends up a winner, but what we do need to look at is how they use rest, exercise, sleep and so on. And, how they manage symptoms. In other words, the kind of down the line consequences. When those change, the research shows people start to get better.
     
  2. Koan

    Koan Be the change.

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    Hello my lovely Kim! Having just done Wessely (where is the screamie face?!) I am very touched by your sweet concern and would drop my head on your lovely shoulder if I could.

    I think I have popped out of the toaster - for tonight at least.

    Thank you, dear Kim!
     
  3. gracenote

    gracenote All shall be well . . .

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    Thanks so much Koan. This is great. No I mean, it's horrible. You did a great job of transcribing Wessely's horrible words. It really helps to read them I was a bit charmed by that English accent of his, but now I can say Yuk! Puke! Gag me!

    Okay, enough from me. Now it's parvo's turn to add the commentary. Please do it in a different color so it will be easy to read.

    Thanks again, Koan. Now back in that toaster (or whatever), and get some rest.
     
  4. fds66

    fds66 Senior Member

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    Brilliant Koan - good work. There's also a section later on by the guy who did the Dutch research and that was pretty depressing because he says he's done with XMRV research. I'm not well enough at the moment to quote exactly from that but I think we might want to be aware of what he said too.
     
  5. natasa778

    natasa778 Senior Member

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    he is either dangerously ignorant or "conveniently forgets to mention" that the brain is formed in part by immune cells

    A whole branch of science nowdays called neuroimmunology looking at the ways the brain and the immune system are intrinsically linked. Some should tell that to Simon. Or is he playing a village idiot?
     
  6. Gerwyn

    Gerwyn Guest


    I didnt know that victims of car accidents were treated in A and E by psychiatrists now.Is there no end to their talents!
     
  7. Gerwyn

    Gerwyn Guest

    He doesnt need to PLAY at being the village idiot!
     
  8. Dr. Yes

    Dr. Yes Shame on You

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    from natasa778:
    I think he is playing the Minister of Propaganda.

    I've been thinking of adding a signature to my posts. Wessely's pod people have produced quite a few candidates. But there are so many gems in this one podcast that I can't choose! (Imagine a rimshot between each of these):

    Meaningless, yes.
     
  9. natasa778

    natasa778 Senior Member

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    "sobeit"

    turns out he will not care if his pathetic approach is laughed at, why would he, it is not him who is sick and suffering right now. sobeit.
     
  10. Koan

    Koan Be the change.

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    BMJ Podcast Part 2

    DJ: We briefly mentioned XMRV there. In October of last year, the Lombardi team, based in the US, published a paper in the journal Science in which they suggested that a novel virus, this XMRV, could cause the syndrome. The paper’s garnered some controversy and one scientist who’s looked at it in closer detail is Cathy Sudland. Cathy’s a senior clinical lecturer and honorary consultant neurologist at the University of Edinburgh. She’s actually written a response to this paper which is due to be published in Science soon. And, she’s also written up her experience of that in the BMJ this week.

    So Cathy, for a start, could you describe the Lombardi study for us?

    Cathy Sudland: It was a study looking to see whether a particular newly discovered virus, called XMRV - which is a new retrovirus, which has been found in prostate cancer patients - they wanted to see if it was associated with Chronic Fatigue Syndrome. So, they did what’s called a Case Control Study. Uhm, they had samples from patients with Chronic Fatigue Syndrome and samples from patients without Chronic Fatigue Syndrome, healthy controls, and they used a variety of viral detection methods to compare the cases with the controls and they found an excess of the virus, a very large excess of the virus, in the samples from the cases as compared to the controls.

    DJ: Ok, so they thought that this might have something to do with CFS, then - a causative agent.

    CS: Uhm, yes.

    DJ: Now, for people who are listening who might not pay much attention to basic science journals, Science is a prestigious one, isn’t it?

    CS: Yes. I mean, it’s not a journal I read an enormous amount because it’s often has articles that have a lot of laboratory science and that’s not something that I do a great deal of myself. And, it covers the whole spectrum of scientific discovery, really, from climate change to things that a relevant to everyday medicine. And, so, when there is an article that relevant to everyday clinical practice, and I hear about it, then I would take an interest but that doesn’t happen very often.

    DJ: But, you did take an interest in this particular paper and you looked a little further into the methodology of their study, didn’t you?

    CS: Because the paper seemed to be suggesting that there was a very big excess of the presence of the virus in samples from patients with Chronic Fatigue Syndrome - and, I’m not an expert in Chronic Fatigue Syndrome - but I knew from my own clinical work as a neurologist and from talking to colleagues who know a great deal about the field, that there’d been an interest in viruses as a potential causative factors, or triggers. And, I think you’ve heard from Simon Wessely, a causal link for some cases has never been identified. But there’s never been suggestion that there’s one virus that’s predominant. And, there’s always been, I think, a number of other factors contributing to the syndrome. So, I thought it would be interesting to find out a little bit more about what this paper was claiming, so I read it in quite a lot of detail.

    DJ: And, what did you find?

    CS: Well, I’m an epidemiologist so I’m very interested in the methods that people used to make comparisons between cases and controls and what I found, mainly, was a description of the laboratory methods but what I couldn’t find in there was very much information about how the cases with disease, with this condition, had been selected - exactly where they’d come from. And, in particular, how the controls had been selected to make sure that they were an unbiased comparison group. And, to me, that seemed to be one of the most important potential uhm missing bits of information from this paper which might help us to assess whether the finding was accurate, reliable, repeatable and generalizable to other patients with this condition.

    DJ: Since the paper was published, there have been a few more studies that have tried to replicate these results. What have they found?

    CS: The original study in Science, it’s clear from the paper that the patients were recruited from the United States and they described that they’d been recruited from areas of outbreaks of Chronic Fatigue Syndrome. So, some case of chronic fatigue seem to occur in clusters, others seem to occur more sporadically and they may have different causes.

    Uhm, but whatever, these patients came from the United States. And, subsequently there’ve been three studies, that I’m aware of, that have been published that have looked for the virus in patients with Chronic Fatigue Syndrome and they’ve looked at samples from the UK in two cases and, in one case, samples from the Netherlands.

    DJ: So, the paper just mentioned from the Netherlands was just published in the BMJ last week and so is available online, for free, from BMJ.com.

    I’m now joined, on the phone from Cathy in Holland [sic] by one of the researchers of that paper Jos Van der Meer is a professor of Internal Medicine at Radboud University in Nijmegen.

    He’s been studying infectious diseases, and the host response to them, and particularly Chronic Fatigue Syndrome.

    Jos, we heard from Cathy there that the patients in the Lombardi study were all from a cluster of Chronic Fatigue Syndrome that appeared in the states. How did you recruit the patients in your study?

    Jos Vandemere: The patients we studied were all sporadic cases that came to our out-patient clinic. We wanted to be fast so we needed material which we had frozen away so we - and, we needed lymphocytes - so we had to go to a cohort we did, a cohort of patients, ahhh, which were very well defined and, actually, which we had used for other viral studies. And, in [this is unclear but is most likely:] “methodological studies” with matching controls.

    DJ: You looked for the presence of this XMRV virus

    JV: Yes.

    DJ: And, can you take us through your results?

    JV: Yeah, so, in none of the patients, and none of the controls, we got any signal that there was, really, the genomic material of this virus present. And, we really scrutinized that with high sensitivity and high specificity PCRs. And we used the same PCRs as the Lombardi group did...

    DJ: Uhm...

    JV: and we really challenged our own results: redid it and redid it, really to find and think, actually we put in... All our positive controls, we had the virus just by luck, by sheer luck, in our urology department because of the prostatic cancer connection. They were, they were... urologists were into the virus. So, we had the virus and we had this, kind of a, head start and we could do, beautifully, the positive controls. Which were all doing what they should do. Whereas the patients really was negative.

    DJ: Ok, so does...

    JV: Of course, we’re not alone in that. There are now at least two other cohorts that are found negative and I have heard rumours from the US that other people can’t, ahh, also can’t confirm the Lombardi data.

    DJ: Ok, so does that... do you think you’ve really refuted the role of XMRV in Chronic Fatigue Syndrome?

    JV: I think I’m done, I’m done with this. If the two British groups don’t find the virus, we don’t find it, and there is, according to the rumours at least, one American group with a good virology score [?] who couldn’t find anything, I think this is the wrong track. And, probably there is some kind of contamination in the Lombardi lab.

    DJ: OK...

    JV: Or, it is peculiar for this [unclear: “score”?]. They looked at ... But for us, it is a closed book now. I would say I don’t have too much urge to go deeper into this matter.

    DJ: Ok, so if you’re closing the book on this virus particularly, are you doing any other research that’s looking into this?

    JV: We’re very much open to, say, other viralogical triggers. Right now we’re more on the track to say it’s not so important whether you get Epstein Barre virus, or a flu, or Q fever, or any other causative organism.

    The interesting part, to my mind, at the neurobiology of this. What’s happening to the brain at that point in time? How is the neuro___ ____ [unclear] system, at a level of the brain, being deranged and why does that give rise to fatigue these people sense and how is this maintained. For me, those are the major questions right now.

    DJ: So, XMRV doesn’t appear to be the single cause of Chronic Fatigue Syndrome. But, even if it were, it wouldn’t effect the outcome for the patient. The syndrome would still be treated pragmatically with the aim of mitigating its symptoms.

    I’ll leave you with a final word from Simon Wessely about the future of the research into this disease.

    SW: And, I’m... but I do think about this particular episode, you know, the XMRV story. I don’t want people to go around thinking that science isn’t making progress in this area, ‘cause it is. I’m not so involved now as I used to be but I’m still watching out what’s going on. And, we know so much more than we did twenty years ago as a result of careful, painstaking research by a large number of people.

    I don’t think we’re going to get that sudden eureka Archimedes moment before which everything was dark, after which everything is light. I think it will be a gradual, steady series of small steps forward.

    And, I really do hope that, you know, doctors and medical scientists in all sorts of disciplines get more involved in this area because we certainly need it - it’s an under-researched area - particularly to bring in people from right across the board of medicine, and to get involved in this area. And, uhm, because I can just tell you that it’s... you’d be surprised to learn that it’s actually very enjoyable and very rewarding. And, we want people to engage in this area and help move it forward in a steady fashion.

    Berta: And that’s all for this week...
     
  11. Koan

    Koan Be the change.

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    I'm now going to take a little break. I had so mnay thoughts about this as I transcribed it but no juice left to voice them now.

    later...
     
  12. flybro

    flybro Senior Member

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    pluto
    A business (also called a company, enterprise or firm) is a legally recognized organization designed to provide goods and/or services to consumers.[1] Businesses are predominant in capitalist economies, most being privately owned and formed to earn profit that will increase the wealth of its owners and grow the business itself. The owners and operators of a business have as one of their main objectives the receipt or generation of a financial return in exchange for work and acceptance of risk.

    Health care, or healthcare, is the treatment and management of illness, and the preservation of health through services offered by the medical, dental, complementary and alternative medicine, pharmaceutical, clinical sciences (in vitro diagnostics), nursing, and allied health professions. Health care embraces all the goods and services designed to promote health, including preventive, curative and palliative interventions


    Now I understand whats going wrong, we're all thinking HEALTH CARE and Wessley is thinking business and profit.

    Now we've got that cleared up, could we please get this extremely astute advertising execuive out of the way and get some Health Care Profeesionals (not business or ad men) involved.

    Who is responsable for keeping Wessley in positions of power in our lives for so many years?
     
  13. Koan

    Koan Be the change.

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    Ah, thanks so much, Maarten! (I was closer than I thought, actually.) I will edit in the corrections.

    Thank you also for your insights into this character.

    Koan

    PS: I have spent some very pleasant days in your lovely city - between flights at Schiphol - but I'm afraid I spent most of that time in cafes. :innocent1:
     
  14. Gerwyn

    Gerwyn Guest

    I've sent the following communication to the Countess of Mar

    ar Lady Mar,
    I write regarding the BMJ podcast re Me/CFS in general and the comments of Simon Wesselly in particular.The following is a direct quote;

    SW: Well, the next step then, you know... The model that we use at the moment, unsatisfactory though it may be, is that it’s a bit like being in a hit and run accident.

    You know, you’ve been hit by a car; we don’t need to know the number plate of the car that hit you in order to rehabilitate someone who’s been in a road traffic accident.

    Nor, when we’re dealing with CFS do we need to know precisely what virus it was that you had and when."

    its just as well that psychiatrists arnt allowed to treat victims of car accidents.applying the same treatment to all such victims could lead to some very unfortunate outcomes

    On a more serious note this interview resonates with such comments.Above all a scientific researcher must display intellectual and emotional neutrality yowards the phenomena under investigation

    Dr Wesselly has gone on record as insisting that ME is a somatoform disorder contrary to the position of the WHO on the illness.


    How can the government allow such a man with clear prejudices to participate in the design and the conduct of the PACE trial

    Since when is a psychiatrist an expert on a neurological disorder.

    The vast bulk of research monies into the causes of ME are ploughed into studies assuming psychological causation.This is a totally unscientific approach.
    Science begins with observations not preconceptions.


    Explanatory hypotheses are tested with the aim of trying to disprove them.The psychiatric approach is opposite to the established scientific method.

    Surely it is time for research in this area to be put on the correct scientific approach.Pet theories have no place here.The many millions of poundsof taxpayers money wasted on blindly following the dogmatic positions of a small number of psychiatists have yielded naught but self fullfilling propheses.Perhaps it is time for the prophets to step aside and leave the field clear for proffessional independent scientists.


























    Yours sincerely,and respectfully
    G.J Morris BSc LLB
     
  15. fingers

    fingers Senior Member

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    SW Endland
    Apart from SW's nauseating voice and demeanour, the highlighted above is what struck me.

    He hasn't got the first clue about this condition. He thinks it's about fatigue, being tired.

    Simon, we don't blame you for having such a small intellect. Even if we find that you do have some brain cells, we're not going to do anything about it. We don't need to know exactly where you were educated (or the names of the teachers) to be able to start your process of education. What we need to do is look at how you use that brain cell. Research shows that once people take their heads out of their arses, they start to notice things around them, they start to realise that they don't need to live in a fantasy world of psychobabble anymore, no need to continue fighting that cartesian battle of whether to lextract your head from your arse or not.
     
  16. willow

    willow Senior Member

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    Fingers that's hilarious.

    Gerwyn, great letter.

    Koan, magnificient job. Hope you've got your juice back.

    Willow
     
  17. Esther12

    Esther12 Senior Member

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    I think he's quite bright. Just misguided. I actually think the parts you bolded are fine, but I think he might be using 'fatigue' in a wider sense than you expect. I naturally use quite a wide definition too, so don't find it confusing, but I know others do.

    He comes across as a bit silly whenever he starts talking about cartesian dualism etc in relation to CFS though - I don't know if that's because he never really explains himself properly so I just misunderstand him, if he really is confused, or if he is just trying to mischaracterise his opponents rather than actually communicate an idea. Very often he just seems to waft these terms arround to imply there's something necessarily naive about those critical of his work, but he's never able to make clear exactly what - other than in the case of absurd straw-men. Has anyone ever seen him write at length on these matters?
     
  18. Koan

    Koan Be the change.

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    .....

    .....
     
  19. Koan

    Koan Be the change.

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    Fingers, I could bring myself to put anything at all in the same space with that absolutely brilliant piece of writing!

    Brilliant!
     
  20. Koan

    Koan Be the change.

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    Hey Esther,

    I don't have two brain cells to rub together myself just now but I do want to say that I think he says nothing, ever, that means anything and that that is absolutely by design. Listening to him reminds me of the coaching one can see on YouTube re how to talk to an ME patient: Don't disagree with them, don't say they're not sick, don't say anything that makes any sense at all really. After all, you have the right to remain obtuse, if you refuse to remain obtuse, anything you say can and will be used against you in a court of law when someone challenges their rights to benefits.
     

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