International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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New paper on ME in Psycho Research by Esther Crawley Jan 2018

Discussion in 'Latest ME/CFS Research' started by Murph, Dec 28, 2017.

  1. arboretum

    arboretum

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    I'm aware of the situation in the UK. I don't live in the UK, but one of the people I saw helped run the PACE trial, and the others have had links to clinicians and researchers in the UK. They've generally supported GET and CBT (despite this, a few have also done research into the biology of ME), and have had plenty of experience with researchers and clinicians in the UK (and probably especially the ones that support GET/ CBT). If anything, they are much more likely to say that most researchers think ME is psychosocial. I'm not denying that you, or anyone, has been treated unfairly. I've personally seen a number of doctors that have been very rude and dismissive.

    You're right that the NICE guidelines are out of date. (In the 1990's and the 2000s, the psychosocial view was a very dominant view.) But even the current NICE guidelines are based on research that a reasonable proportion of ME specialists and researchers would agree with, of whom a large amount would still think it is biological. What matters to them, is what they think the evidence shows. And to many of those, the evidence indicates two things: that ME is treatable with GET and CBT, and might have a psychological component, but also that ME is biological. You can't say that the current NICE guidelines are proof that most doctors that specialise in ME think it is psychosocial.

    I'm not saying anything about what the government thinks, or whether those NICE guidelines are correct or not, but regardless of the misguidedness of most ME researchers approach to treating ME, of the people I've spoken to, which is a big sample as far as the ME world goes, the overwhelming understanding I've got has been that most ME specialists and researchers - even if they agree with those outdated guidelines, even if they don't like pwME, and even if they're in the UK - think ME is biological. That might seem hard to believe, but that is the case. Even Esther Crawley and Simon Wessely are on the record of saying that ME has a biological component, and they are on the extreme end. It isn't necessarily in their interests to say that, but they have to, because it is undeniable.

    I'm not saying the government cares about ME, or that it's treated well, or that ME patients are taken seriously, or that doctors aren't rude and dismissive, but I am saying, despite all that, a majority of ME researchers and specialists think it is predominantly biological, and most don't see supporting GET/CBT as in conflict with that. (They wouldn't see a reason to think that, because CBT and exercise therapy have been found to be helpful in other physical conditions. To them it isn't such a big deal.)

    (also antiviral drugs haven't conclusively been found to be effective in ME. Trials are still ongoing, and most trials fail)
     
  2. alex3619

    alex3619 Senior Member

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    One problem with a biopsychosocial view is you can claim you agree ME is biological but then do everything else as though its psychosocial, including failing to update knowledge on the biomedical advances. How something is talked about, what is claimed about it, and how it is actually used can be three different things.

    Currently there are no properly validated treatments, nor diagnostic tests. This however blinds many to thinking there are no useful tests. That has not been true for a decade. Tests can be run that are useful to assist understanding, determine level of disability, and find the effectiveness of treatment approaches. The repeat CPET is one of those, though it has its own risks.

    I am starting to realise there is another disconnect between medicine and science I was only dimly aware of. An N=1 test is find as long as you do not try to generalise it. You can test an approach on a patient and see what it does. This is in fact what most doctors do most of the time, but informally and without a control. The reason we want something like an RCT is so the result can be generalised to a group.
     
  3. arboretum

    arboretum

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    Except the people I've seen have actually done research into the biology of ME, so that doesn't really pan out with the people I've spoken to. Also, I don't see how it is in the interest of people trying to convince others that ME is psychosocial, to go around saying it is actually biological. Guidelines relating to biomedical advances are actually slowly being updated - the NICE guidelines are in the slow process of being updated, and the CDC updated its guidelines recently. And you raise a good point. I don't know why that CPET test isn't used more.
     
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  4. Deepwater

    Deepwater Senior Member

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    The evidence never showed that GET and CBT are effective. FINE got a nul result, and the flaws in the PACE trial are such that its claims were meaningless. I never met a doctor who had bothered to read it - they just accepted the trumpeted conclusions at face value. At the same time as PACE (which a simple reading would show to be flawed) was accepted by the NHS at face value in the teeth of warnings from the patient community, the results of all biomedical research were steadfastly ignored. This is called bias in the real world.

    I actually didn't.

    It is actually in their interests to say it at this point because it is undeniable. The same thing happened before XMRV was shown to be a contaminant. Every time they think their empire may be about to crumble they try to fudge themselves a bridge or ring fence a small area to hang on to. But talk of a biological "component" is just meaningless rambling; so is "predominantly biological" which you refer to further down your post - both are still saying that no one gets ME without a particular psychology working on the biological component. When pressed, Wessely, Crawley et al. still say that the trigger was an infection but the ongoing debility is of psychological origin. So that's not really a biological illness at all, just a psychological illness with a biological trigger. No one who really believed ME, with its hallmark PEM, is biological would be proposing GET as a treatment - I beg to differ with you on that.
    The guidelines for medics using the BPS approach include an instruction to the doctor to put the patient at ease by first reassuring them that their illness is "real", so one often has to read between the lines with what they tell the likes of us, or press them for a detailed explanation of what they mean.
    We're never going to agree, though, are we?.
     
  5. alex3619

    alex3619 Senior Member

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    Further there is the view that GET is unethical as a treatment for ME, not just ineffective. Its why contrary studies to PACE will not arise, as those who are competent to do them think the treatment is unethical, based purely on the known and provable biology. CBT on the other hand, ignoring for now the issue that there are different kinds of CBT and they are not equivalent, may well find its way into mainstream ME treatment as a secondary supportive treatment that does not try to convince patients to push themselves harder.
     
  6. ChrisD

    ChrisD Senior Member

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    Is there a chance that Crawley has started to recognise that she needs to cover herself for the impending dismissal of a majority of her work due to the mass change in paradigm when it comes to ME? I.e. making admission that there are different subgroups of ME/cfs and that some patients can't be treated - perhaps for legal interests - maybe I am reading too far into this?
     
  7. Countrygirl

    Countrygirl Senior Member

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    But it is a majority group in the UK.

    I phoned a 'fatigue clinic' and the person who spoke to me assured me that CFS is a mental health illness and they do not take patients who have physcial illnesses. The clinic is run by the psychiatric hospital, the ex-Victorian lunatic asylum.

    They section people (and children) with severe ME as they do not recognise that severe illness is on the ME spectrum.

    A GP told me that 'My colleagues regard people with ME with more contempt than they do people with depression'.

    The main county hospital told me that ME is a label that is given to people with mental health problems. When an ME patient is taken to the major county hospital with a serious physical illness that is unrelated to ME they are told:

    (1) We know you have an ME diagnosis. Don't expect to be treated kindly here.

    (2) We are writing on your hospital records that there are to be no investigations or tests for any unrelated condition.

    I kid you not!

    I know, because it was said to me following a stroke and cardiac problems of a serious nature. it is at least attempted murder by wilful medical ignorance.

    I really don't see how you can compromise on the serious harm that the PACE trial people and their supporters like Esther Crawley have inflicted on the UK.

    I don't think you appreciate the seriousness of the situation.
     
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  8. alex3619

    alex3619 Senior Member

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    That is the history of psychobabble. It continually reinvents itself, so when disproved they can say no, that was the old psychobabble that was disproved. THIS is the new psychobabble! [Substitute the new psychobabble term for psychobabble as appropriate.]
     
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  9. arboretum

    arboretum

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    Well the fact that I've met a number of doctors and researchers who think GET/CBT work, but also think ME is very much biological isn't a fact that I'm compromising on.

    Doctors can think that GET is effective and still think it is biological, because the ones who think GET is effective often apply it by only increasing exercise if the patient can increase without PEM, and they try hard to do it without negative effects. Many of them, if they do think it is effective, don't think it's that effective - just that it is a bit helpful. Even if you look at the statistics of the pace trial - it only shows 10% more people finding GET effective over pacing.

    If you won't believe that doctors who support GET/CBT can think ME is biological because you think it's a way to save the BPS model (which says the opposite), then I don't think it's going to be very possible for you to be convinced.

    And, here's a paper: https://www.ncbi.nlm.nih.gov/pubmed/29284500, that has Hans Knoop as the second author, demonstrating that certain cytokines are increased in ME. That makes it a bit hard to claim he thinks ME is psychosocial.
     
    Last edited: Jan 5, 2018
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  10. anni66

    anni66 mum to ME daughter

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    I really think that this debate is informed by where you access services. I have no doubt that in some parts of UK ME is viewed as a psychiatric illness. In other areas there seems to be a broader perspective.
    I think this is the first time in my life that i have been thankful for the absence of specialists.

    My frustration is the lack of ability to access further investigative services and potentially future issues due to diagnosis . I am aware of two teenage girls who last year were diagnosed with lymphoma ( stage 2 and stage4) because their symptoms were marked down as " just ME"-
    GP is empathetic and i think willing to have a more open mind, but referrals ate rebuffed.
     
  11. arboretum

    arboretum

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    Also, I should point out that if you go onto this journal, and look at the articles, most of them are about physical conditions such as asthma, Parkinson's, psoriasis, heart disease, diabetes, hypertension, multiple sclerosis, and stroke. The name of the journal doesn't mean much.
     
  12. lnester7

    lnester7 Seven

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    Why didn’t you sue? Just out of couriosity why plp don’t denounce this things?!
     
  13. arboretum

    arboretum

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    Well, it's hard because people don't care, they don't believe you, and most people don't take ME or ME patients as seriously as they should. Most doctors and researchers that don't actually specialise in ME don't take it very seriously. That's a fact.
     
    Countrygirl likes this.
  14. helperofearth123

    helperofearth123 Senior Member

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    Correct me if I'm wrong but it seems there is no control group? It seems to be saying that those who were less severe (i.e. fewer symptoms) are more likely to recover in 1 year than those who are worse. Some people with ME/CFS do recover with no treatment so it looks like meaningless results because they didn't compare treatment with no treatment.
     

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