Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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Please post here if you're a medic who thinks CFS is primarily psychological!

Discussion in 'General ME/CFS News' started by Esther12, Mar 26, 2010.

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  1. Esther12

    Esther12 Senior Member

    Apparently Wessely looks at this board. Other doctors and psychologist probably do to. I've been told some are under-cover (I've even been accused of being one of them). Wouldn't it be great to be able to have an serious and honest discussion with one of them?

    In public they always seem rather evasive, or else utterly disinterested in the clearly disordered thoughts of their patients, but here they can use an alias and just discuss their ideas and the evidence they thinks supports them without fear of compromising their position.

    I'm sure a lot of us have distorted views as to what the psychologisers think, and it would be great to be set straight. Most of the time it seems the psychologisers and patients just talk past each other: We blame them for being slippery, dishonest and manipulative. They blame us for being militant and refusing to entertain even the possibility that psychology could helpful. Lets see!


    (Edited the title for clarity. Hard to do with so few letters!)

    And clarification: I realise 'psychologiser' is not really a appropriate, but seeing as it's the concise term generally used on this forum I've adopted it.
  2. max


    ...... " a serious and honest discussion with one of them" .........


    why invite them to carry out their brainwashing technique on this forum? Do you think they offer anything other than CBT and GET?

    In their opinion, nothing has changed since victorian times - the UK government gives them all the room they want - why would you give Wessely any further opportunity to spew his warped view on ME/(CFS)? Surely he has made it quite clear.

    In my humble opinion, the damage done by this man and his band of witch doctors in the name of medicine is unforgivable.


    PS. I've not finished with FD 23/4553/1, - there's more to come.
  3. Angela Kennedy

    Angela Kennedy

    Essex, UK
    Frankly, I think this idea is dangerous to patients. Sorry. Ethically I think we (that includes non-CFS sufferers like me) would be made very vulnerable and put at risk.

    If we think of the harm already being done to patients by the psychiatric paradigm (and evidence is on this board every day, whether documentary evidence, or first person accounts of iatrogenic harm, or even expressed distress, then to find people trying to debate with the psychologisers, perhaps finding themselves victims of the very problems people blame the psychologisers for perpetuating, then there might be high feelings exhibited by some patients which will be used in ad hominem attacks against the community (Are you even aware that this is a massive problem facing the community? Ad hominem attacks accusing them of all sorts of character flaws? Coming from proponents of the psychiatric paradigm and supporters as much as anyone else? There's a history of it.)

    And your "I'm sure a lot of us have distorted views" is frankly untenable. You cannot possibly know that. It is an opinion, and a rather objectionable one which can be contested easily. I'm not trying to be combative or unpleasant, but I do find your generalizations about the community objectionable as expressed at times.

    I feel you may not know what has been done to patients and their supporters, how deeply the ad hominem attacks on the community has threaded through government, medical and even lay discourse. If you had awareness of this, you would understand my objections to this idea.
  4. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    ok, what doctor that thinks that will be fool enough to post here?

  5. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

    I don't know... every single one that I've ever met was a complete and utter incompetent moron.
  6. starryeyes

    starryeyes Senior Member

    Bay Area, California
    Yep, the ones that psychologize ME/CFS are morons and I don't think debating with them will change that.
  7. Ian McLachlan

    Ian McLachlan

    I agree Angela. It is dagnerous for all. We have seen examples in the past (such as the RSM conference) in which professional people have used such things as angry letters they have recieved from the ME community, and rather than acknowledge and undertsand as to why people feeling so vulnerable and in despair are driven to do so, instead choose to hold them up as evidence to support their postition.
  8. garcia

    garcia Aristocrat Extraordinaire

    JPV, I think its something to do with the "Hypocritic Oaf" they have to swear by. Only morons allowed. (Allegedly).
  9. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

    Yeah, maybe there was a time where we had real doctors. All we're left with now are government sanctioned drug dealers for big pharma interests.
  10. free at last

    free at last Senior Member

    I can see why Esther would think this could be a good idea, The only problem is there opinions are so far set now, that nothing other than scientific evidence is ever going to change there minds, we all know that here. The devide between us and them is just too great i feel.

    Its a shame though, as real learning from both us and them could in theory be a good thing, I personally do think that the mind can not be seperated from the body intirely, and that anxiety depression, panic attacks certainly are part and parcel of ME CFS, infact any illness could be.

    But thats not the same as saying these conditions cause the illness. But more these conditions arise out of the illness itself. what makes ME CFS so disturbing is the long remissions that some sufferers experiance. Even short remissions really confuse the issue a lot, as you maybe relatively ok one week but bed bound the next. Doctors and shrinks do not like such conditions, as it creates confusion and uncertainty in diagnosis,

    they like everything to be black and white. someone is rather sick or not. WHAT DO YOU MEAN YOUR FINE FOR A WHILE THEN BAM YOUR VERY ILL. the condition of ME CFS itself creates this confusion and uncertainty. It doesnt surprise me one bit that most of the health professionals think the condition is mostly in the mind. Even i, over the years would question myself, am i nuts here or something, when in remission, only to think why did i think that when walking around like a white ghost with jelly legs, feeling nausea, sweating feeling like fainting, so one has to lie down for long periods, untill recovery starts again.

    So i understand to a degree why the illness portrays such a picture to them, and there reasons for beliving it to be all in the mind. You know maybe some of us would think that too, if we wasnt experiancing first hand how terrible and destructive to the body this illness really can be. I understand there reasons for thinking like this. But often i find it hard to forgive them for the neglect and lack of real action that comes about from thinking like that. It angers me badly. I even embaressed myself to simon Wessley telling him things about my condition that were so very private,

    just because i thought if i tell him everything, finally someone might help me. But they didnt, like all or most on here i was left to rot in a bed with such terrifying symptoms that i truely felt like i was in hell. I can not and never will forgive such people for not trying to help me in someway. Not all healthcare workers were like this, i had a good doctor, but even he didnt really know what to do, neither did my consultant at hospital. But they knew something was wrong, at least i got that little bit of respect.

    As for simon wessley i feel he leaves out the bits that dont fit into hes little mind theorys, and concentrates on the things that do, like depression anxiety or panic, all the natural things that arise from someone being so terribly ill. and scared. It doest happen the other way around as much as they think it does. does it.

    The devide is too great Esther, but i see why you would like to try. I just wish it could be so. I might stop posting on here, i have never really talked to a group before that experianced what i did, it felt like i belonged or something, seeing you all here. But im just to negative all the time, too wraped up in my own self trauma to be of much use to anyone here. i apologize
  11. Mark

    Mark Former CEO

    Sofa, UK
    Please don't stop posting, Free At Last, if your posts are anything like that last one. What a thoughtful and balanced reminder of how some of the more perverse aspects of the condition make it frustratingly easy to see how some people - even ourselves from time to time - can wonder if it really is all in our minds. I don't remember seeing anybody here having to apologise for feeling negative and consumed by their own trauma. The openness with which people are able to talk here about their experiences - including all the darkest aspects - is one of the greatest things about this forum. That sense of belonging and identity and being properly understood for the first many of us have described that. I think that all comes from the freedom to share those negative thoughts and experiences, and of course the bravery of those who have blazed that trail. If negativity is where you're at, then that story deserves to be told. Please don't stop!
  12. paddygirl

    paddygirl Senior Member

    I've been on these forums for ages but never joined in but this time I must. Esther12 has the lovely belief in people that ends wars, but too much harm has been done to engage with these minds or allow them to mess with people who have had to endure enough negativity.
    I brought up two children alone while fighting this thing, and blundered in the dark for many years. My intelligent but limited doctor gave me a book from a rheumatologist which informed me that I have a personality disorder. She had obviously seen my tears in her office and my descriptions of panic attacks I was experiencing while telling my body to keep going, it wasn't exhaustion I was feeling and that the pain was 'stress/menopause/overwork' (my docs words depending on the year I saw her) .
    I feel pretty sad that many doctors are not healers by nature, and shudder at the idea of having a mental illness and asking the psychologists of the Wessely type for help.
    By the way, the clever witty and very decent people on these blogs have given me comfort on many a dark day just by reading their words. Lets not pollute these clean waters.
  13. Mark

    Mark Former CEO

    Sofa, UK
    Regarding the premise of this thread, I guess that, sadly, the responses so far are probably right: such a dialogue carries many risks and is probably impractical, and it's unlikely that any psychologisers would be prepared to wander into the lion's den like that. Most of them publicly express more nuanced positions these days anyway, knowing that it's politically and scientifically unacceptable to continue to maintain that ME/CFS is psychological.

    But I agree with Esther's broader aims in proposing this idea, I find that the huge gulf between us and them is ultimately counter-productive for everyone, and without any such channels of communication we run the risk of manufacturing straw-man arguments all the time. I wonder whether anyone else out there finds themselves running dialogues with these people through their minds, rehearsing what we would say to them if we came face to face? I'd love to see some kind of debate with them take place, because their position appears so easy to expose, and because it would be fascinating to see what would come out in such a grand clash of opposing views. More heat than light, perhaps, but it's probably impossible to develop any rigorous philosophical argument without some kind of dialectic process, so the absence of dissenting views can be harmful to us as well.

    Does anybody else have any other ideas how Esther12's proposal could be developed into something workable? Perhaps we could invite more friendly psychologists on for some kind of 'live chat' thread, some sort of time-limited, moderated interview, with guidelines to keep it from degenerating? Is there a radical wing within the post-Wessely psychologists who have more understanding of the physical realities of ME/CFS, people we could actually bear to hold a civil conversation with? Surely there must be academics out there - philosophers and psychologists - who are sympathetic to our condition and able to help us develop the counter-argument by explaining the details of the Wessely school's latest position?

    While I think of it, I've wondered before about the idea of getting well-known names on here for a live, time-limited Q&A thread? Or a thread to gather together questions to put to - say - Mikovits, Kerr, Hooper...and then email those questions en bloc rather than everyone emailing them individually.

    Alternatively: we have in the past found that people like SW are prepared to engage in email conversations, and that has ended up in a kind of mediated 'Q&A' session with them. If we mediated and controlled the dialogue somehow, established a channel of communication through intermediates (as many will recall Holmsey did so for us a while back)...perhaps then we could avoid some of the pitfalls mentioned in this thread?

    I feel sure there's the seed of a good idea here, even if it needs a little development...
  14. Cort

    Cort Phoenix Rising Founder

    That's a great idea. The Chat Room isn't up to it yet but we could conceivably do a live chat session with some people at some point.

    I wonder if we could find some common ground with the CBT crowd. I would be very interested to know

    • exactly what CBT is, ie. what different therapies it entails. Some of them such as pacing and sleep hygiene seem very normal. I'm not sure about the others. I'd really like a better understanding of what it is
    • What claims can they make about CBT - how effective is it in what percent of patients? I imagine that we'd find that it is helpful to some degree in some patients and not helpful at all in others. If so, how do they account for those patients it does not provide a cure for?
    • Are they really suggesting that CBT is the only possible treatment for CFS? And that research into patient physiology should not continue?
    • What kind of illness do they think ME/CFS is? Besides being allied with FM and others - what other illnesses do they believe it is most closely related to?
    • Could any of the physiological abnormalities in CFS suggest that CBT and other therapies like that could be helpful in some degree?
  15. Esther12

    Esther12 Senior Member

    Well - interesting to see other's views on this.

    @ freeatlast: I'm sure we all feel a bit traumed sometimes. Living with a condition like CFS is a ruddy nightmare - but that's no reason to feel you shouldn't post here. I feel like I contribute very little compared to a lot of others - but that's just the way it is. On a forum like this, even us layabouts contribute something by widening the range of ideas discussed.

    @ Mark: "I wonder whether anyone else out there finds themselves running dialogues with these people through their minds, rehearsing what we would say to them if we came face to face?"

    Never read a Wessely paper before going to bed.

    I understand why some people would be concerned by the idea of encouraging this sort of discussion, but if you really want to avoid reading it, you could just not do so. I'm not worred about being brainwashed over the internet (although for a while there, Islamic Jihad was looking mighty tempting). There have been numerous examples of proponents of the psychological model misrepresenting the concerns of patients in order to try to make them seem absurd. Largely, they get away with it because they're respected and we're not. To be honest, I don't think a thread like this could make things any worse: those looking for an excuse to dismiss us all as unreasonable miltants fighting to pretend we're ill already have their excuses. I'd have thought that having a discussion on a forum like this would be far better for us in public perception terms than having the psychologisers able to present their own representations of our views as matters of fact.

    It could well be that it generates some unreasonable and angry quotes from patients - or maybe we'd be able to restrain ourselves sufficiently and present ourself in a clear and cogent manner. We could all promise to leave our post a while and re-read before posting. Or nominate some-one to choose which comments to post if we really thought we were likely to explode with rage at the arguments being presented.

    I really want to be able to talk things through with a medical professional who's willing to defend the way CFS has been treated by the psychologisers. As far as I can tell we've been relegated to quackery, and I want to have this either defended or changed. No-one with any authority seems willing to do either. Surely someone should be able to explain: "This is why the way we're treating you is fair." (I realise that sounds slightly childish - 'life's not fair' as any adult would reply. But there are varying degrees of justice, and surely supporters of the way CFS is currently treated should be able to argue that their approach is more reasonable than the alternatives?)

    I agree with Mark that the nearly-Wessely discussion through Holmsey was interesting, although died out before it got going. I'd have much prefered being able to see his own words though.

    Well - any psychologisers out there: feel free to PM me (although I will of course then spend the next thrity years quoting you out of context and claiming this proves you are evil and insane).
  16. Carrigon

    Carrigon Senior Member

    PA, USA
    My uncle is a hematologist and general practioner. He has maintained from day one that CFIDS/ME is psycological and to this day he still will not budge on the subject. He is a drug pusher. He believes in giving antidepressants for everything. And he will push any drug that will give him free perks. He has gotten free cruises from the drug companies. He has gotten free dinners. Free airline tickets, Free hotel stays, Free trips to various countries all on the drug companies money. You would not believe how much they give to doctors for pushing their drugs. He doesn't give a damn about the patients. He only cares about his next cruise, so anyone walking into his office is just another free dinner to him. He doesn't care how much any of us physically suffer as long as he gets those drug company perks. If the drug companies do this with him, then they certainly do it with other doctors around the world. They have endless deep pockets full of money. There is no way to compete with that. And that's a main reason we get no real support from alot of doctors.

    Other doctors will take the same stand because there is no profit in healthy patients. If they make us well or functional, we won't keep running to the doctor. Right now, CFIDS/ME patients are the perfect meal ticket. We are never well, we make them alot of money. Every time we go to the doctor or the ER, all those medical people are making money off of us. By keeping us sick all these years, they are guaranteed an income. The same goes for acid reflux. Most cases of acid reflux are caused by antibiotic resistant H. Pylori. The doctors are not interested in curing an antibiotic resistant infection because they get huge kickbacks from the antacid drug companies. We make them alot of money. They will never cure it. No profit in a healthy patient who no longer needs to go to the doctor.

    You can argue with these people all you like, but you will always lose because you aren't the one lining their wallets with money and expensive freebies.
  17. Dr. Yes

    Dr. Yes Shame on You

    Trust me on this one, if you can.. As one who has spent an unfortunate amount of time arguing with 'psychologizers' from a variety of medical and 'scientific' fields, I can tell you that a discussion with one of them here would be fruitless at best and most likely put a lot of unnecessary stress on many in this community. A lot of us have already had this discussion with many professionals many, many times. (I am referring here to those who think ME/CFS is in part or in whole psychosomatic, not to these who merely suggest CBT as an adjunct coping mechanism... though I have other problems with them, including the fact that they are redefining CBT without changing the name, which is confusing and dangerous on a lot of levels.)

    As to Mark's other idea, I've hoped something like that would be possible for a long time. I agree with Cort that Chat would really be unsuitable for this purpose... why not just start a thread while the person is online? Not sure how one could arrange a queue of sorts for asking questions, but I'm sure it could be worked out beforehand.

    What would also be great is if researchers in other fields (say, the guy who recently ran the neuroimaging studies on GWI patients, hint hint hint) that are not yet but could become interested in studying ME/CFS could be invited to hear from members of the forum. If we can get even one more researcher in the right area interested in studying ME/CFS patients, it would be worth it.
  18. Orla

    Orla Senior Member

    Honest discussion impossible with psychologisers

    I think the idea is unworkable for many reasons. For starters they will not treat us like equals. They never do. Some might be happy to get yet another forum to promote their ideas, but they will exit, or distance themselves,as soon as people start asking awkward questions, start pointing out inconsistencies in their positions, flaws in their ideas, start pushing them to really answer questions they are skirting around etc. Ths happens again and again with these people as I have known others to try to debate with them over the years.

    I have also experienced people, who were obviously taken in by these quacks, to act essentially as mouth pieces for them, which is sad to watch, and can be very destructive in a forum. This would likely be their method of communication of choice, filter what questions they want to answer, seem like they are answering, or seem like they are saying something when they are saying the opposite, avoid answering questions, ignore cetain people, undermine critics, play the victim and so on.

    If people want to know what these people think then just look at their words and their actions. There is no substitute evidence, and no short-cut to going around just seeing what they say and do. The evidence is there for the examining. It is important as well to read critiques of their ideas, as otherwise some flaws can be missed, or even if someone knows they are talking nonsense, it can be useful to see concrete evidence against their ideas.

    There is no mystery to what CBT is, just look at a psychology book or information from CBT associations. We don't need to ask these basic questions. As for those who promote CBT for ME/CFS, again this information is in the public domain. Though I do think there can be something of a difference in the US and UK in this regard, but this gap will lessen if the Peter White's of this world get their way.

    No matter how tempted we might be to try to put a positive spin on their ideas, or try to convince ourself that they are not just off-the-wall and can be reasoned with, it all comes back to the evidence on the ground, how people are treated, and the lack of biomedical research and treatment. This is the result of definite policy and not some accident of history.

    There is no common ground with these people, either you think we are all nuts and imagining we are sick when we are not, or you don't. These people need to be opposed and got rid of, because while they have any power they will oppose us as they have done very successfully until now. They may pretend to try to reach common ground, but they do not budge and inch from their position, so any attempts to reach common ground will only result in PWME/CFS moving towards the psychologising position rather than vice versa.

    This has happened in the UK with groups or individuals who tried this approach essentially ended up being co-opted into the psycho-social view of this illness. Interestingly, though the psychologisers might pretend to be trying to reach common ground, or listening to the patients, they are very prepared to undermine even the groups they are "working with" publicly. If they are prepared to do this publicly, they will do it even more in the board rooms, committees etc.

    Why waste energy trying to move the immovable, who are not biomedical clinicians so who cannot come up with good treatments anyway, when so much work needs to be done? For example: educating the less stubborn/ideologically committed doctors and researchers; raising money for research; general awareness raising; helping patients with difficulties with housing, welfare etc.; and publicly opposing what these people stand for when possible (e.g. by responding to bad or misleading article, and responding to good coverage in order to encourage it).

    I think before people bend over backwards to accommodate those who would seek to frankly destroy our lives, surely helping those who really need it, and helping those who would like to support us, should come first?

  19. parvofighter

    parvofighter Senior Member

    C'mon Mark

    As Dr Yes so eloquently put it:
    Productive dialogue? C'mon Mark, what's going on here. Tell me, HOW in the world is this productive to attempt to reason with a brick wall - the psycholobby - who have yet to make an intelligent pronouncement on the science of XMRV. And especially, how is this productive when I already get illuminating, productive discussion on the science (not marketing) of ME/CFS with the luminaries on this website and elsewhere? This forum is filled with a ravenous appetite for scientific knowledge, not for waning propaganda from a bunch of has-beens. I'm interested in science, not straw men. ;)
    On the contrary, I find the huge gulf between
    the psycholobby and the likes of Silverman, Mikovits,
    Klimas, Coffin, and Peterson enlightening and liberating.

    It probably is counter-productive (a euphemism for "alarming") for the psycholobby, as they are seeing increasing cracks in their powerbase. And so they grasp desperately at the vulnerable patients at our fringes. I have no interest in a discussion with members of a paradigm that is rooted in flawed research, manipulated cohorts, coping strategies that are foisted on us as treatment, and a complete unwillingness to catch up to the last decade of biomedical research in ME/CFS. WHY in heaven's name would you want us to move backwards?

    The relevance of Narcissistic Personality Disorder to any discussion with the psycholobby
    You might want to read the threads on Narcissistic Personality Disorder (NPD) and the psycholobby. I would encourage you to look into the futility of trying to reason with a person with NPD. And the behaviors of key players in the psycholobby fit this paradigm beautifully. I encourage all of you who are thinking of "rehearsing what we would say to them", to learn about NPD, and to accept that people who are malignant narcissists are clinically incapable of feeling empathy. These people need LESS attention (except to gut and expose their flawed research) - not MORE! Any psychiatrist who understands Narcissistic Personality Disorder will tell you that reasoning with an NPD is a zero-gain proposition to try to bridge this gap. The best thing we can do is learn to accept that this lobby is comprised of several personalities who have zero empathy, and despite an adept talent for manipulating the media, have an embarrassingly thin understanding of science on ME/CFS. And they have a massive ego interest (if not also financial) in preserving the status quo that ME/CFS is psychogenic. After all, people with Narcissistic Personality Disorder are known to stop at nothing in their quest to preserve their altered view of reality. Our view of reality is supported by evolving science and the reality of our physical signs. Theirs by self-congratulatory rotating and incestuous peer review among "the usual suspects". To make matters worse, NPDers are clinically devoid of insight they will never get the grievous damage they have foisted on this patient group. In other words fellow patients, you are smashing your head against the wall in an attempt to rationally discuss the scientific facts of ME/CFS with them, or to seek any kind of meaningful understanding of their motivations. Trust your symptoms. Read the science. Listen to reason - and your body. Get psychological help if needed to COPE with the neglect of this illness. Leave the psycholobby to sink in their mire.

    Other threads on Narcissistic Personality Disorder are here:
    and here

    Bring on the scientific ME/CFS luminaries - not the Psycholobby's stale Infomercials!
    As for Cort's idea - YES, by all means, let's bring in interesting people in chat or otherwise. But for heaven's sake WHY would you give a platform to the dregs of the psycholobby? Now a psycholobby skit, on the other hand, performed as some type of a broadway musical. THAT would be funny!
  20. parvofighter

    parvofighter Senior Member


    Patients who "get it"
    @Esther12: One of the reasons I come to this forum is because this is a community of patients who "get it". With some exceptions, and even though we don't always see eye to eye on the evolving science (and that is stimulating), this is a community of patients who are fighting for recognition, medical care, deeper scientfic understanding, and justice. I am astonished how many threads there are that discuss bizarre symptoms that I have too. There is so much to learn about ME/CFS, and connecting the myriad physiological dots of course, is the essence of understanding this disease. This is a fascinating, supremely complex multi-system disease that is not only beyond the competencies of those in the psycholobby, but also beyond those of many medical doctors too. To be fair to the psycholobby, it is the combination of the medical community's abandonment of ME/CFS (read "cop-out" in the face of complexity), combined with the raptor-like attention of the psycholobby, that has got us in this mess, where most of us are undiagnosed, much less receiving immunological treatment.

    A complex multi-system disease looking for capable hands
    And so I'm always fascinated by medical shows that capture the journey of patients with rare or unrecognized diseases - that finally fall into capable hands. These are typically characterized by bizarre, multi-system manifestations - like those in ME/CFS. The hallmark of these "eureka" medical moments are typified by physicans with intellectual curiosity and the humility to recognize that they don't know everything. As Jerome Groopman wrote in his classic book, How Doctors Think,

    "If you listen to the patient, he is telling you the diagnosis."

    The psycholobby's blunt instrument
    Contrast this with the reality that the psycholobby encourages more and more dilute definitions of ME/CF, and who apply a similarly blunt instrument to treatment("CBT/GET for all, they cry!). This merely confirms for me that many of their members (not all, I would add - just look at Dr Ellie Stein) are using a very blunt intellectual instrument indeed. And the trend is downward, not upward (just witness the BMJ's last oeuvre). (To see just HOW blunt their instrument, read the thread on the British Medical Journal's so-called XMRV study in ME/CFS, which used 20-year old blood:

    The last thing we need
    The last thing that seriously ill ME/CFS patients need is someone to plant the seed of doubt that this complex neuro-immune disease is all their fault; that the remitting/relapsing nature of this disease proves we're neurotic. This is easy to do in the early stages - believe me, I kept pushing myself to get more fit, healthier. You name it. And I crashed even harder, and very likely did irreparable cardiac, neurological, and immunological harm to myself. Why should a patient for example with RNase-L abnormalities - in other words, who clearly has an abnormal antiviral pathway - WHY should they explore the psychogenic causes of their being unable to fight a biopsy-confirmed persistent viral infection? Other of course, than to learn to cope with a chronic illness - as patients with other chronic diagnoses do.

    Support to cope with incompetence
    In discussion with other ME/CFS patients, frankly the best support they've gotten from a psychologist was the encouragement to PUSH for a diagnosis - rather than to blame the disease on themselves (i.e. engage in the kind of "dialogue" you're so humorously recommending):

    "You've got so much going for you. You WANT your life back.
    It just doesn't fit. This isn't depression. ADVOCATE to get to the bottom of this!"

    And so, many patients here receive help from the psychological/psychiatric profession to cope with the medical system's incompetence in dealing with this physical illness. Iatrogenic despair and grieving, you might call it.
    Allow me to qualify this: discuss CBT as a coping strategy, while the big boys (i.e. molecular biologists, retrovirologists, hematologists, oncologists, cardiologists, exercise physiologists, etc) do their work to treat this biological illness? Sure. Discuss GET as a pick-me-up after, say, all chance of exercise-induced cytokine storms and aberrant auto-immune response etc. has been eliminated with antiretrovirals, immunomodulators, and targeted antiviral therapy for opportunistic infections? Sure. But why "discuss" CBT/GET with personalities who have no understanding of the scope of ME/CFS science, and who at best are able to deliver a tired infomercial on somatization?
    When thoughtless comments go bad
    Along comes a post like this that in my eyes shows a stunning lack empathy. That you are so apparently blithe about stirring up this hornet's nest perhaps underscores my point about the psycholobby and Narcissistic Personality Disorder. If we were indeed to encounter a member of the psycholobby here (which would surprise me no end).
    On the contrary, you show little understanding of why we are so deeply concerned for our fellow patients. I and many others seek these types of posts so we can add a voice of reason. And so we can stand up for other patients, to ill to post for themselves.
    You give the psycholobby too much credit if you believe they can brainwash us. But they most certainly can #$%!@ with our minds. Frankly, your cavalier post reminds me of an indifferent child, stirring an ants nest with a burning stick.
    Esther12, while it is refreshing to see someone take the injustice in the ME community in such a lighthearted manner, you are perhaps gravely underestimating the power of this community. In just a few short months this forum has exploded, and continues to grow. Patients are not sitting back, and are fighting back not just with emotion. You would be wrong if you thought there were a question that,
    Your dismissal of forum members is palpable, as is your indifference to genuinely upsetting seriously ill patients.
    I'll tell you what's better for public perception of the ME/CFS community. It's the intelligent and heartfelt posts on this forum - with full recognition of feeling goaded by someone who is indifferent to the pain they cause. It is the intellectual eviscerations of a medieval and unscientific treatment model that pushes exercise and mental self-flagellation onto a population of patients with neuro-immune disease and possibly the next AIDS. It is the exposure of an incestuous old-boy's club who peer-review each other's unscientific missives - and have done so for decades. And it is the exposure of misrepresentation of not only ME/CFS cohorts, but ME/CFS patient interests - at the highest levels of government (just read my post on the BMJ).

    This isn't paranoia. It's measured, cold, hard reason.
    Very sexy biomedical science on ME/CFS.
    And it's coming to a neighborhood near you.
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