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Peter White/Barts - comments on draft NICE guidelines - insight into their views

Discussion in 'Action Alerts and Advocacy' started by Dolphin, Dec 15, 2009.

  1. Dolphin

    Dolphin Senior Member

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    I think this post may have led to this March 9 blog post:
     
    Sean likes this.
  2. Leopardtail

    Leopardtail Senior Member

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    Frankly,

    A movie about our systematic abuse at the hands of 'medicine' is exactly what we need. The group organising this would make a fine plot for a bond movie in which they got their 'just desserts'.

    This does seem very much like the stuff of a Tom Hanks movie, in which the harm done to an amiable character by GET is highlighted.

    I have been thinking for some time that we need a different kinda of media involvement in which our story is told in a direct and personal way.

    Great idea, now we just need a movie mogul with CFS/ME to make it happen.

    Leo.
     
  3. peggy-sue

    peggy-sue

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    I have just noticed this amongst PW's list of "somatoform disorders" on Dolphin's post.

    Premenstrual syndrome.:jaw-drop:

    Silly wummen again, you know.
    Nothing at all to do with raging, real, physical, molecular, organic hormones.:rolleyes:
     
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  4. alex3619

    alex3619 Senior Member

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    There has been a move to classify at least some PMS as psychiatric since I think DSM-III.

    These people play with words. Its semantic sophistry. Based on functional disease not having obvious structural change, it follows that PMS must be functional. Yet at that point the slight of hand is done: if its functional, it must be psychiatric. The only evidence of functional disorders I have ever seen is biochemical. Many genetic diseases are functional by this definition, so are many diseases considered to be physical.

    Here is another kicker though: changes in physical structure at the molecular level do not, somehow, count as structural changes. The only thing that counts is gross structural change, like a blocked artery or something.

    Biochemical changes must not be real. Gross physical changes (eg. vasodilation) do not count, they are not structural changes. This is semantic sophistry, extreme denial of the physical.

    As more and more "psychiatric" disorders are shown to be due to other factors including pathogens and auto-immmune disease, where can they retreat to? To the nebulous and mythical, because nobody can prove that snarks and boojums do not exist.
     
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  5. peggy-sue

    peggy-sue

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    I've been diagnosed with a "functional" one leg a lot shorter than the other. :p
    There is a difference in my height from 5' to 5'2", depending on which leg I stand on.
    (as measured by a nurse a fortnight ago)

    However, the chap at the biomechanical clinic laid me down on a couch and measured my legs, and said they were the same.

    I did explain that I had sciatica (which was why I was in the clinic) and that I felt the problem was actually in my hips or lower back, I went through the change some time ago, my bones could be crumbling a bit.

    No investigations into my hips or lower back, no scans no x-rays.

    I just have a "functionally" short leg. :mad:
     
  6. Dolphin

    Dolphin Senior Member

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    Peter White even has a profile page on the .gov.uk site:
    https://www.gov.uk/government/people/peter-white

    His role isn't mentioned but it includes:
    It/he talks about his CFS work.
     
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  7. Valentijn

    Valentijn Activity Level: 3

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    :vomit:
     
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  8. Dolphin

    Dolphin Senior Member

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    Maybe this has been mentioned somewhere before but Peter White has been involved in the creation of Dept of Work and Pensions (DWP) guidance for disability assessments (in the UK).

    See:
    https://www.whatdotheyknow.com/requ...D S2 CMEP 0017 Mod 6 Chronic Fatigue.pdf.html
    or
    here:
    https://www.whatdotheyknow.com/requ.../2/MED S2 CMEP 0017 Mod 6 Chronic Fatigue.pdf
    Background information is available here:
    https://www.whatdotheyknow.com/request/training_briefing_and_knowledge#incoming-289774

    ---
    The recent update doesn't have their names on it, although it has been suggested to me that doesn't mean they were not involved with it (I haven't been following it too closely).
     
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  9. chipmunk1

    chipmunk1 Senior Member

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    Have they ever seen a patient in real life?

    i think this happens when a bunch of incompetent and clueless people fools sit at their desks fantasizing about illnesses instead of listening to patients in real life.

    But no it must be the evil "gluten free" foods and the meth addiction that are causing the CFS.

    One might add here: the name functional disorder is increasingly used within medicine because it implies a pathology for which there is no evidence needed.
     
    Last edited: Jun 25, 2014
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  10. Sean

    Sean Senior Member

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    :D
     
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  11. Leopardtail

    Leopardtail Senior Member

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    Given that three of the references are by Wessley, and all but one are completely Psychological - it's not hard to work out who wrote this is it? The "Fatigue being of central origin" also kinda jumps out.

    There is no wonder we are treat so badly by the DWP.
     
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  12. Dolphin

    Dolphin Senior Member

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    From an article by Peter White http://www.eastlondon.nhs.uk/Resear...ewsletters---docs/RDNewsletter,Summer2011.pdf (thanks to @Maxwhd on Twitter alerting me to this)

    Note that the Barts CFS service led by Peter White generally won't provide letters to support their patients applications for benefits. Also, I've heard services linked to the Barts service e.g. in Essex, similarly don't provide such letter, citing advice/direction from the Barts service.

    I'm not aware that this policy has changed despite the fact that the 5-million pound trial he led, which was partly funded by the Dept. of Work and Pensions, found neither CBT or GET led to decreased numbers receiving benefits (in fact the numbers, like with APT and no individual therapy, increased).
     
    Last edited: Jul 16, 2014
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  13. Leopardtail

    Leopardtail Senior Member

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    Just wondering here whether they are breaking Human right law there.... and whether anything could be done about them.....
     
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  14. ukxmrv

    ukxmrv Senior Member

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    Not unless we can find a lawyer interested in this. I did a sweep of "human rights" lawyers a few years ago and there was no interest.

    After the NICE Guidelines Judicial Review I'd be very careful taking legal actions. Also that experience may have turned a lot of lawyers off sadly.
     
  15. Leopardtail

    Leopardtail Senior Member

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    I am not in the area, so couldn't do it. In this case the challenge would not be the medicine but discrimination by imhibting access to disabled benefits.

    The NICE challenge fell down primarily on a technicality, the two people who mounted it 'entrapped' a person from NICE and thereby messed their case up. The issue as you say would be finding a lawyer though, most of them are terrified of taking on ME cases.
     
  16. Dolphin

    Dolphin Senior Member

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  17. Dolphin

    Dolphin Senior Member

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    I believe this was originally in the newsletter of the London MESH West London group
    PDW patient complains about his defn of recovery.png
     
  18. Dolphin

    Dolphin Senior Member

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  19. Research 1st

    Research 1st Senior Member

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    It fascinates me watching the fundamentalists talk about patients being mentally ill (CFS and ME aren't mental health conditions!) and sticking to this myth like an entrenched religious belief, irrespective of advances in science now spanning thousands of published research papers long.

    It reminds me of being a voyeur into a strange sect, maybe like something from the film 'Omega Man'.

    People with entrenched views, will stop at absolutely nothing to get their way. This is the danger of these people having so much power, and so much financial backing. Perhaps history really never does learn?

    When the pathogen and/or autoimmune cause is found, the patients will have spent their whole lives being kept away from society, because of a ruse, because of a rumour. It was that easy. Pure conjecture, no actual fact.

    I can't think of anything worse in a democracy. What patients are experiencing, is a form of state sponsored discrimination, based not on science, but on control.

    If the patients are de legitimised through non science, then science need never be started. What a tragedy for those who are labelled with ME CFS, their loved ones, and carers. All needless too, and that is the most wicked thing.

    Thank God for people like Dr Montoya who are dedicating themselves to biomedical research, infection and immunity and trying to develop a biomarker so there is so hope these dinosaurs will go back to their caves and start nibbling the tundra rather than spouting what is tantamount to disability hatred, but one that is rubber stamped.
     
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  20. Research 1st

    Research 1st Senior Member

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    Good question.

    I would say only if you have evidence of what are classed as proven harm.
    E.g. because of doctor X, harm Y occurred to you and here is the subsequent diagnosis....

    To prove this, you would need evidence in your medical file (in the UK at least) of psychological or physical events caused by others neglect or lies. Not difficult to prove per se, but you'd need money to start legal action.

    What ME CFS patients really need is group legal action, what used to be called a class action law-suit.This takes organisation, money, the will to go through with it, and also health to cope with the stress.

    Is this possible? I would imagine paradoxically those with the most evidence of damage (in order to sue) are the most psychologically and physically harmed by the fundamentalists. :thumbdown:

    Personally I think unless you find a like minded group of people, all with incredible resilience to all the factors needed to 'win', I doubt it's going to happen any time soon due to the ease in which the suffers sufferance can and will be mocked and doubted as 'real'.(The press would be used against the patients taking legal action). We know who controls the 'science' behind the press of ME CFS.

    Yet further down the road, maybe 5 or 10 years once the pathogen is proven, I think patients will come out of the closet and have far less fear of being targeted by the press, the authorities and the medical profession.

    LGBT and racial social movements can teach ME CFS patients a lot about how to stick together, and how not to feel shame for a label that is (at the time) perfectly legal for nasty people to slur and defame disabled minorities with, as ME CFS suffers currently experience.

    Are there groups of ME CFS patients who have irrefutable evidence in which to take legal action? Perhaps if a trustworthy person, e.g. a famous person offered to be the ring leader for abused patients to put their faith in. Potentially then these poor people would come out of the wood work and expose the extremists who deny their suffering as genuine.

    I would definitely agree that denying mental or physical suffering of accepted medical conditions, to the point a person can prove harm, must be against their human rights.

    Recently, disabled people are afforded more rights, that they were in the past, so this is a start.
     
    Last edited: Oct 31, 2014
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