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No More Psychological Studies. An editorial, by Mindy Kitei

Discussion in 'Action Alerts and Advocacy' started by Mindy Kitei, Feb 2, 2011.

  1. biophile

    biophile Places I'd rather be.

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    Two more points to consider

    • Unchallenged psychobabble is a direct obstruction to the funding of biomedical research and will continue to haunt us when making such demands.
    • What happens when government officials answer "why not" to more psych studies?

    Although my views and words on other peoples' reasoning processes regarding this issue are not as strong as Angela's, I certainly do share her concern for the apparent "fixating on a magical panacea of 'biomedical research' ALONE", "putting all the community's eggs in one basket (biomedical research)", and "demand no more psych studies, without evidence or reasonable argument as to why, and everyone magically followed our demands". Focusing on the positive and ignoring the negative is less than optimal here.

    Analysing the psychological research is not simply about "engaging with the researchers" to "change their minds", as Recovery Soon seems to imply. It is everyone else who need to understand they are being hoodwinked with psychobabble and assfacts (government officials, journal publishers and readers, medical authorities, the general public, etc). Again, please don't underestimate the inertia of the status quo, the entrenchment of psycho>somatic explanations even in the presence of organic pathology, what's at stake for those in positions of authority, etc. Just because we think many of those psychological studies are "junk" does not mean the rest of society agrees and won't heed the questionable results of these studies.

    Let's go back to what Mindy said: "patients energy might be better served by renewing the government phone call, fax and email campaign. Why not confront the source of the problemthe National Institutes of Health, which funded the studyand say: No more." OK, hounding government officials sounds good, but what happens when the government officials start answering back "why not?" with a speech about how psychology and psychiatry are worthy fields of investigation in CFS and have an "evidence base"?

    Mindy also mentions that CBSM is used on HIV/AIDS and cancer patients with the benefits mostly occurring because they have biomedical treatments. Obviously we need biomedical treatments as well, but that example suggests to me having an accepted biomedical disease isn't going to stop the push for CBT/GET or goalpost-adjusted equivalent in CFS even after successful biomedical research. Suppose the (UK) PACE trial is published as another "success" for CBT/GET and the NICE guidelines reopen for an update. Who's going to respond in depth to the PACE trial's flaws if they don't have a firm understanding?

    Suppose hundreds or thousands of patients and advocates march on some (US) government building demanding "no more psych studies, biomedical research now!". Government officials aren't going to roll over easily, there would be short-changed answers and scuttling behind the scenes. Then news reporters and smug commentators move in, and after doing minimal homework, will start asking n00bish yet "tough" questions on national television and in newspapers, where most of the audience probably think they are hilariously observing a bunch of [irrational, angry, anti-psychiatry somatisers], with their "enablers", greedily demanding money for a fake illness during a period of economic downturn. Who's going to challenge the erroneous stereotypes and volcanoes of psychobabble that will no doubt erupt in such a situation, and how utterly stupid would it look if no one was fully prepared to explain in detail why the psychiatric paradigm is flawed?

    But using the same reasoning of that argument, letter writing and pushing for more biomedical research did not prevent her death either, so is that also a waste of time? One may then argue, "but if we had the biomedical research done earlier, she wouldn't have been subject to those horrendous conditions". However, Sophia suffered severely at the hands of psychobabble, so another could argue that stopping the psychobbable would have been just as important as biomedical research.

    I agree that not everyone needs to be analysing the psychological studies, but they do need to be aware of such analyses because at some point they will need them. Critiquing flawed biological research is also important. I appreciate the need for real action and cutting through the intellectual pleasantries, like loud street protests, but I don't know how that could be arranged successfully. It is a numbers game and a critical mass is needed for any strategy, but many are too ill and only a very small proportion are involved in the ME/CFS "community". I think it is very difficult to know what is needed to be done, people have been at it for over two decades.

    pictureofhealth suggests going to a Wessely lecture and being rude to make him uncomfortable. I think such an approach would be more effective if the person in crowd could actually explain briefly to the audience why such a lecture was fundamentally flawed. If every public lecture was challenged with reason, the audiences would start walking away wondering if it was a house of cards, rather than wondering why the lecture got heckled with apparently-unjustified rudeness, which BTW many people interpret as the classical response of somatisers in denial who cannot handle being told the "harsh truth" about their psychosomatic illness.

    Some good points.

    This thread is dying a slow death, so I'll hopefully finish with reiterating what jace said earlier:

  2. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Hi Biophile - I think those Wessley lecture comments were mine - post #50 (not Recovery Soon's).

    I don't think this thread has been a total waste of time as I have learnt a lot of new info from you and Angela. Perhaps we could have spent more time earlier on sharing information and my position could have been less dogmatic and dismissive.

    The reason I so firmly try to avoid any thread discussing CBT and psychology on any ME forum is precisely because it generates such strong feelings which personally make my illness worse. I learned this v early on in the ME - anger makes ME worse. I am trying to 'let it go' because otherwise I will end up spending all my energy on 'what i don't want'.

    I don't have any time or energy for CBT and GET theories - literally. It might seem like a sensible idea to spend time intellectually counteracting these psychological theories, but at the end of the day, a politician or a policy maker or a doctor will simply say - do you have a better idea? If you don't give them something else to cling onto they will simply stay with what they have. This is why I think that spending money on finding the cause of ME & biomarkers is what matters.

    There would be no CBT and GET as 'treatments' for ME if the actual biomedical cause of the illness was found and treated. GP's would be thrilled to bits to have a diagnostic test and pharmaceutical or cardiac or whatever treatments.

    I still maintain that the ONLY way to get the policy makers to change policy is to give them a better idea, something they can run with (a reproducible biomarker) and inexpensive treatments. They don't have time or the interest to wade through long documents.

    I agree that stopping abuse of vulnerable citizens/patients (me included) should be implemented in all countries. Perhaps a good step in this direction would be to have a more publicly accountable NHS/health service provision where there are more easily accessible pathways for complaints and where psychiatrists/GP's do not have the immediate right of psychiatric imprisonment/labelling on anyone, simply for disagreeing with them.

    But you see how easy it is to get angry and self righteous when someone disagrees with us - I do. Doctors and psychiatrists are just the same. What we have to do is effectively legislate against human nature's propensity for self righteous indignation and violent protection of our intellectual concepts. (ie for eg. "If you don't agree with my medical diagnosis, that is an affront to me and an outrage, you must therefore be mad and I will punish you accordingly"). How can we legislate and protect vulnerable patients against this very human behaviour in doctors, when we can't even stop ourselves from doing it on this forum when we disagree with each other?
  3. Angela Kennedy

    Angela Kennedy *****

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    Hi, Picture of Health

    But you don't have to engage personally in this work if you don't want to or can't. Other people can though. There's many things I can't do in advocacy but I'm happy for others to do. The problem arises when those of us engaging in that much needed critique have their work trivialised and deemed futile, which is what was happening.

    Unfortunately, biomedical cause and treatment for this illness would just NOT stop CBT/GET. The DSM-V is likely to allow mental illness diagnosis of ALL organic illnesses where uncertainty of aetiology exists (so basically ALL organic illnesses) - this is the work Suzy Chapman has been engaged in (documenting what is going on). The editorials in the psychiatric journals make for extremely scary reading. The level of fallacious reasoning being endorsed is frightening, and the implications for sufferers of all illnesses are potentially extremely adverse because of this. So, as biophile has indicated, biomedical research alone will not stop psychogenic explanations and their effects.

    I'm sorry - I think that putting the community's eggs in one basket is not a good idea. These solutions of your may never happen in yours or my daughters lifetime. And the problems of psychogenic explanations are not going away by themselves, or even with more biomedical evidence. But also - critical analysis of psychobabble can still be something that can be 'run with' in various ways. Inexpensive treatments? Likely impossible.

    I
    In societies where psychobabble has run rampant without logical and effective critique - this is unlikely to be achieved. Sadly the UK and US are two of those societies. Even some psychologists are aware of that (Robert Fancher, David Smail, for example). Again - this is where critiques of psychogenic explanations are useful- to provide OTHERS with alternative ways of understanding previously denied them by the prevailing ideologies of the psychs.

    I think that's very unfair on everybody. By this logic, we should all behave like angels or automatons and should never be listened to unless we do. This whole situation that has arisen this weekend was highly adversarial, and I had no choice but to take an adversarial stance, in order to highlight that this was an adversarial situation. Some people could not understand the problem or the extent of the problem, but the problem was still there. Plus I think you're characterising the argument incorrectly. Who called people mad, for example?
  4. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Thanks.
    The 'mad' comment is my reference to GP's simply being able to resort to an inappropriate diagnosis of 'Munchausens by Proxy' if parents of very ill children complain about the poor medical service (instead of accepting that they are providing a poor service.)

    We do need legislation to prevent doctors falling into this 'rabbit hole' whereby they simply avoid responsibility for the patient and give up on them, because its 'too difficult'. A home visit and an I/V drip to hydrate a bedbound child/patient and nursing care/help with toileting for eg, might be far more appropriate (though much more expensive), rather than threatening parents with prison or psychiatric diagnoses for caring for their child or 'not obeying the doctor' or (rightly) criticising him/her.

    A patient with a 'regular' heart problem, or cancer, or their parents, would not be threatened with prison for criticising a doctors prescription. The doctor would be rightfully sued for neglect though if they left the patient at home uncared for. This doesn't happen with ME.
  5. Angela Kennedy

    Angela Kennedy *****

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    Hi again Picture of health,

    Ok- this is where it potential ramifications of the new DSM are at their most sinister for those people who have not yet been through the 'rabbit hole' of the above as you've described (ie sufferers of other organic illnesses).

    It does look as if any uncertainty in aetiology in even an 'uncontested' organic illness, or if a patient is deemed non-compliant in treatment (any treatment), they may be slapped with a psychiatric diagnosis, either of being mentally ill for not complying with treatment, OR mentally ill for being physically ill with symptoms the doctor doesn't understand, or acting outside the narrow worldview of the doctor in response to their illness, OR all of the above.

    Some of us have been trying to get to grips with the implications of this, as Suzy Chapman has been working to make the relevant documentation available. ME/CFS sufferers may well be in a worse position than ever. It is key that there are no apprent commentators outside the ME/CFS community dealing with this issue (the specific psychogenic diagnosis of organic conditions afforded by the new DSM proposals). but the outside society may well find themselves teleported at warp speed through the rabbit hole if the DSM changes the way some of us think it is likely to (from reading the evidence available).

    Some of this use of psychiatric diagnoses might be to enforce 'compliance' by the way. 'Compliance' or lack of it is a major bug-bear to doctors if one looks at the medical literature, and is related to power struggles and claims to authority.

    Working on ways to let society at large know how flawed psychogenic explanations are evolving is probably a good idea in the circumstances.
  6. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Thanks!

    Here is an article you may find interesting written by a UK Prof of Psychology, though it will hopefully appeal to all who have posted here for different reasons, including the 'biomedically fixated' like myself:

    http://www.publicservice.co.uk/arti...=Health Overview&article=15476&forumid=331851

    It sums up how most of us feel about the injustice of our situation, but may not have been able to fully articulate.

    I have to say it certainly helps to have an NHS job and therefore a publication outlet to get professionals to take a point of view seriously. Though I do have to wonder how long this intelligent woman will remain in circulation, given that her views are so sensible and yet so radically opposed to the current medical insanity!
  7. Cloud

    Cloud Guest

    Maybe I need to re-read Mindy's blog because I don't recall her focusing on any individual or group....just a practice. A practice that in her opinion has become a waste of precious time. Ok, so that's her view (and many others) and people are entitled to opposing views. People can agree or disagree and express that language productively and respectfully for the greater good. But what I don't understand (and don't want to) is reacting to it as if it were a personal attack. I surely didn't perceive her blog in such a way.

    Intellect, knowledge, and critical analysis are wonderful tools....but only when used with Humility. Otherwise, it can amount to little more than mental masturbation and false pride. Think of the power that could come from a group of such highly intelligent and educated people, if united....similarities as well as differences.
  8. Angela Kennedy

    Angela Kennedy *****

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    But it was an attack on what certain people were doing. Time and again advocates in this community get comments thrown at them that basically go "all that passion doing this- would be better doing what I personally think is best". Sadly, that was what Mindy was doing.

    There has been anti-analytical sentiment rising lately, and, because the work people are doing on counteracting the psychiatric paradigm of this illness is so important (along with other advocacy initiatives) I could not afford to let it drop, because it has become part of a trend (this erroneous belief that counteracting the psychiatric paradigm is futile). If Mindy had said a quick mea culpa, some of this could have been avoided, but she went on to make comments that showed a pretty entrenched view belittling the critical analysis work people do. It was only by me hanging on to the issue (and making myself unpopular in the process) that has forced people to think more about the implications of her comments. Because some people 'couldn't see the problem', while others used it to attack the work people like me do, is exactly the reason it is SUCH a problem. I'm still frightened that sort of anti-intellectual, anti-analytical attitude could still prevail, while 'good people do nothing'.

    Your last comment, to be honest, sounds a bit patronising. I certainly am not mentally masturbating and being proud, for example (who would you be addressing otherwise?). I'm actually fighting for my daughter in the most effective way I can. Again, imagine if I took some advocacy initiative you were doing, and told you it was a waste of precious time, just because I think so - even though I was arguing from ignorance. Or any advocacy initiative here or elsewhere. You would be horrified, and rightly so.
  9. CBS

    CBS Senior Member

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    Hi Angela,

    I just wanted to make a brief comment. I very much appreciate the work that you and Tom and small number of others have engaged in. I wish that I could do more of it myself as I feel it is important to point out publicly in a loud and reasoned voice (using the analytical tools of scientific analysis) that the psych emperors have no clothes.

    As for the psych research itself, I feel we have had more than enough and that any funding of additional research along these lines is a misuse of precious resources.

    I did go back and re-read Mindy's article. She wrote (my bold):

    In my opinion, we are a large community and we all have unique strengths. These psych studies do create a lot of hand wringing (no so productive) but that actual analysis by the small group with the skills to do so (yourself very much included) is important, especially when in moves beyond the CFS community and serves notice to those that produce biased, self-referential, self-serving psych research that they will be challenged and exposed.
  10. Recovery Soon

    Recovery Soon Senior Member

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    You haven't seen sarcasm yet. Stick to the issue at hand and play nice. We wouldn't want to send you crawling back to the Moderators now would we.
  11. taniaaust1

    taniaaust1 Senior Member

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    **thumbs up to this post** it is exactly how I feel.

    Thou angry and to the point I'd actually like to see Wessely himself get ME. Im prepared to let the psychbabble stuff die a natural death as focus is put on other relevent stuff and that is heard more and more and accepted.... the energy of the other crap (psycho stuff) will die.

    There will always thou be people focusing on the different areas of doing what they think is right here, no one is wrong in what they are doing. I think there needs to be more acceptance in the communities that people follow different paths and go different ways about doing things.

    I wish everyone would stop judging what each other is doing and direct their energy out to where they want it to go instead of attacking each other in the same boat.

    What I really appreciate is that everyone is doing what they can to try to change things.... so i appreciate what everyone is doing and all the work people are putting in (even if Im going about things a different way)
  12. Cloud

    Cloud Guest


    Angela,

    Well, of course I was referring to you about reacting to her blog.....But, my last statement about mental masturbation and false pride, was not referring to you, your practices, or anyone else in particular. I had no idea "There has been anti-analytical sentiment rising lately, nor do I know anything about your work, nada....so, it's not possible that I would make such a judgment.

    It's just my experience that Intellect without Humility in any situation is not very affective and can become more about power (false pride), than truth. If discussion of a given problem goes on and on analyzing it to death without moving towards a solution, just for the sake of exercising the ego, I call that mental masturbation (spinning ones wheels, chasing ones tail, etc.). It seems that a lot of energy is put into this behavior on internet forums everywhere. I usually just move on when bored. Anyhow, it was a general, not personal statement. I can't answer why you would have taken it personal because it wasn't meant to be.

    Actually, I have seen several statements to the effect that my type of advocacy was a waste of time and, I don't recall ever being upset in the least, and definitely not "horrified" (cool word) over it. But then it wasn't aimed at me personally...only the specific type of advocacy in general. Maybe it would be different if aimed at me directly. But generally, I just don't care about such things unless it's feedback that may be valid and therefore have some productive value. Plus, I tend to see mostly the good in people and situations which kinda blinds me to some things.

    I believe that Mindy is a big girl and has no problem with responsible and constructive critique of her blog...that's up to her. But, I consider her a gem and hope that anything said to her (critique, praise, or otherwise) could be done responsibly and with respect. And if that is not possible, maybe not at all.
  13. Angela Kennedy

    Angela Kennedy *****

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    Ok- I didn't go to the moderators, as I said in a previous post. Did you not see that post?

    And the issue at hand- that's the issue I've raised for goodness sake!
  14. Angela Kennedy

    Angela Kennedy *****

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    Ok- so you understand that there are good reasons why I took issue with Mindy's post?

    I'd like to think you understand the onus should also be on Mindy to be responsible and constructive in her own critques, and that things said to OTHER advocates (like me, Gerwyn, Tom Kindlon, perhaps) should also be done responsibly and with respect, therefore?

    The reason I took it 'personally' is because I was in the direct situation of this thread. But, by your logic, even Mindy might be engaging in tailspin (or ego exercising or intellectual masturbation), because calling other people to drop what they're doing and follow her way is not constructive (because that is what she was doing). Nor is using the word 'passion' in that patronising way which has become a recurring theme for belittling advocates, both inside and outside the community.

    I have a feeling, by your writing, you are very loyal to Mindy. This should not blind to you the issues I've raised (and indeed, has biophile, and his have been VERY eloquent). Mindy is indeed a 'big girl', and should never be in a position that she should not be held accountable for her actions. None of us should. Whether you realised or not, her words have encouraged other people to attack the work I and others are doing, and she herself went on to exhibit an anti-intellectual stance which- if that prevails, will damage the community and its chances of justice.
  15. Angela Kennedy

    Angela Kennedy *****

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    I'm afraid that's just not going to happen. As biophile (and I ) have shown in this thread alone, the psychiatrists are not going to let ME/CFS go easy, and it won't die a 'natural' death. Which is why I and others have been working on identifying the flaws of psychogenic explanations for this illness (also with other illnesses, at least for me), in order to show others (outside the community as well as inside) these flaws.



    Thank you Tania. I do appreciate that.
  16. Angela Kennedy

    Angela Kennedy *****

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    Thank you CBS. I really appreciate what you've said here. As for your last paragraph, yes, that is vital. Moving beyond the community to expose the flaws of the psychiatric paradigm of ME/CFS is, i think also, a key priority for those of us who can do that.
  17. biophile

    biophile Places I'd rather be.

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    DSM-5 implications

    Hi pictureofhealth, thanks for pointing out my mistake, I will edit my post (#63) to suit. Thanks for appreciating the theme of this thread! You are right about anger, I had to learn that the hard way years ago. My angry faced avatar was sort of an inside joke to whoever recognised it, rather than an encouragment. I changed it to something lighter, but again not an encouragement! ;-)

    Angela raised the issue of the DSM-5 expanding into "uncontested" organic diseases. I'll add: some research suggests, that patients with organic diseases are 3 times more likely to also report "medically unexplained" symptoms than the general population, that psychological factors (particularly depression) can influence the severity of reported symptoms in organic disease, and that there is a correlation between physical symptoms and psychiatric comorbidity irrespective of whether the physical symptoms have a medical explanation or not. I'm not prepared to say out of hand all that is necessarily "psychobabble", but I'm suspicious of methodological problems and concerned how this sort of research is interpreted by the DSM-5 working group. There is definitely fertile ground for psychobabble to overlap into organic disease. Consider the following proposition for the DSM-5:

    The focus will no longer be on assumptions about "medically unexplained symptoms" but on alleged "cognitive distortions", regardless of why you're ill. If you look at the proposed criteria for Simple Somatic Symptom Disorder and Complex Somatic Symptom Disorder, someone can easily and arbitrarily decide whether you're too preoccupied with physical symptoms, even if you have an organic disease. As I'm sure you're aware, "too preoccupied with physical symptoms" is a staple diet for CFS psychobabblers, the legacy of which will probably stick like shit on a blanket even when biomedical research reveals further organic factors in ME/CFS. That is one of the reasons why Angela and I and others are expressing concern here about relying on biomedical research to "save" us from the nightmare.

    One could argue that focusing on pushing for more biomedical research will at least give us recognition and treatments so we can get on with our lives and forget the irrelevant psychobabble. However, Angela raises a scarier possibility than above, that even with more biomedical research, effective solutions may be decades away, meanwhile the psychobabble juggernaut will keep steamrolling ahead unchallenged. It has been recommended that people with ME/CFS who don't recover should see a psychiatrist and/or "psychosomatic expert", even for when rehabilitation and CBT/GET fails. I can just imagine if there were "effective" biomedical treatments for ME/CFS, those who don't respond well to such treatments will continue to be referred to such "experts" merely because they aren't recovering, on the assumption that psychological factors are affecting a medical condition.
  18. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Hi Biophile, thanks for this. I have fully read and taken on board your points. The new direction the psychiatrists are moving in is scary, but also for doctors and other scientists themselves, as they are far from immune to illnesses!

    This particular line resonated:
    QUOTE: " ..some research suggests, that patients with organic diseases are 3 times more likely to also report "medically unexplained" symptoms than the general population.."

    What does that tell us? Well if patients with identified disorders are still experiencing 'unexplained symptoms' to my mind it means that doctors really do not fully understand the illnesses they purport to understand and be treating. Instead of recognising this knowledge gap, they attempt to make up information to fill the gap. ie "Well this patient must have mental problems - that's the only explanation." That sounds like quackery and guesswork to me. Not very scientific. Not to mention a total abdication of professional responsibility.

    Perhaps if doctors and scientists accept responsibility for the work they have undertaken/pledged/promised to do, there will be less of a glaring black hole begging to be filled with the quackery of psychiatry. So let's keep the biomedical research going and not stop til we find the answers - there is always something new to learn! Until we are all well, there is something to be learned, something missing.

    I guess doctors, like all people, can only make decisions based on the information available to them at the time. If they can't find out what's wrong with a patient with physical symptoms, sounds like they need more training. If they recognise that being a Consultant doesn't mean they automatically know all there is to know about their chosen field - perhpas they could allow the patient to be their tutor and guide or invest in further study and research. The symptoms are there to tell/teach them something after all. If they had the all answers the patient would only turn up once and would go home cured.
  19. Nielk

    Nielk

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    I have been suffering from Crohn's disease since 1971. I almost died a few times because I had complete blockages in my intestines.

    Even though doctors recognize it as a physical illness with a biomarker, there are still those that are trying to put a psychosomatic spin on it.
    With the technology we have today, they can have a definite diagnosis when performing a colonoscopy and taking a
    biopsy of the ilium which is inflamed.
    I had this done 5 years ago and the biopsy came back positive - i.e. I have the physical illness of Crohn's.

    Yet, see the article below:




    It makes me wonder if things will be different for us ME/CFS sufferers, once they do find a biomarker.

    If one wants to, they can make a case for almost any illness as being psychosomatic.
    Cancer, heart disease, MS, even the simple cold have been linked to stress related onset. Does that mean that these diseases are not organic or real? Does that mean that we should not try to help these patients and find a cure. Does it mean that they suffer less?
  20. Angela Kennedy

    Angela Kennedy *****

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    Thanks for this reference Neil.

    Wow. How absurd. There is so much that can be shown to be problematic and fallacious reasoning from the title and abstract alone. Can you tell me the full reference at all?

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