The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

MAIMES: Would you like a Public Enquiry into the lack of care and treatment for people with M.E?

Discussion in 'Action Alerts and Advocacy' started by AndyPR, Feb 17, 2017.

  1. AndyPR

    AndyPR Senior Member

    I've seen this being shared around Facebook for almost a week now, so far this seems to be the only source of information about this project.
    All text quoted from https://www.facebook.com/notes/ali-...-and-treatment-for-people-w/10154842358520638

    I would have thought that a Facebook group, page or some similar central point to 'run' the campaign from would be needed, please post if you are aware of one, so far I haven't found anything.
     
  2. Ritto

    Ritto

    Messages:
    97
    Likes:
    416
    Craig was, maybe is, a member of PR. Haven't seen him around since last GMC v Myhill.
     
    keenly likes this.
  3. Molly98

    Molly98 Senior Member

    Messages:
    500
    Likes:
    4,269
    Well if this could be organised and is doable, I am behind it all the way.
    There 100% does need to be a public inquiry into abuses of ME patients. I hope enough MPs will get on board.
     
  4. arewenearlythereyet

    arewenearlythereyet Senior Member

    Messages:
    1,478
    Likes:
    7,571
    I love the objectives ...hate the tone of the paragraph and the proposal though... sounds too emotive and like a victim support group whinging rather than advocates of real science? Needs a serious rewrite imo to make it more compelling and less "hysterical".

    There surely must be more to this than talking up the latest Myhill book? i bloody well hope so since we need to be a lot smarter than this. How many pwme feel comfortable talking up science to MPs in a structured and consistent way with no guidance or leadership? And more importantly no spokesman or coordinator to champion the cause with the press etc. I would like to see a little more in terms of support before doing this. If all I'm doing is being myhills literary PR agent with no further help leadership or campaign structure than what I see here, then I won't be joining this particular campaign. More info needed on this one I think?
     
  5. AndyPR

    AndyPR Senior Member

    I'm uncertain about for a lot of the points @arewenearlythereyet raises. The second headline point (WOULD YOU LIKE A FREE COPY OF DR MYHILL'S NEW CFS/ME BOOK TO GIVE TO YOUR MP?_) just screams marketing exercise to me I'm afraid.
     
    barbc56, Snowdrop, Kati and 5 others like this.
  6. arewenearlythereyet

    arewenearlythereyet Senior Member

    Messages:
    1,478
    Likes:
    7,571
    Perhaps she printed too many copies? Sometimes the minimum print run can be quite high
     
    barbc56, TiredSam and trishrhymes like this.
  7. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,153
    Likes:
    17,870
    I'm not at all sure that a campaign tied to the work of one doctor is the right way to go.

    We need all, or at least most of the ME charities behind this, and cast iron evidence that stands up in court of the harms of GET and the failure of PACE. We also need to find a way to show that the leaders of the BPS model and GET/CBT treatments have wilfully ignored the biomedical evidence and evidence of harms of their treatments.

    What we don't need, and what I think would scupper such a legal challenge, is to muddy the waters with support for one particular small group of doctors providing other treatments, especially ones that haven't, as far as I'm aware had the funding to mount sufficiently large double blind clinical trials to prove the efficacy or otherwise of their treatments.
     
  8. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,153
    Likes:
    17,870
    The latest post in the thread on Simon Wessely on the BBC is relevant to this:
    http://forums.phoenixrising.me/inde...ith-simon-wessely-14th-feb-2017.49161/page-11

    from @ukxmrv :

    It simply isn't true that SW walked in to a vacuum of ignorance at the National ( as opposed to a willful ignorance)

    There are a couple of documents by Margaret Williams which are snippets as she says but are a good starting timeline of what was happening in the late 80's and 90's in the UK.

    As an example (and I've split it up for readability)

    "1988: At a meeting on ME held at The Royal Free Hospital on 16th May 1988, Professor Tim Peters from Northwick Park Hospital said his team had found abnormalities of Type II muscle fibres (anaerobic) in ME patients, which were atrophied, with hypertrophy of Type I muscle fibres; he had measured total RNA in muscle cells and found it to be significantly reduced in ME patients (if there is a decline in RNA, there is a decline in the ability to make muscle protein – infusion of tag-leucine showed overall metabolism is clearly reduced and the rate at which muscle is being formed is reduced).

    1989: Professor Peters (then Professor of Clinical Biochemistry and Consultant Chemical Pathologist at Kings College Hospital, London) wrote on page 24 of the magazine InterAction No: 3 of the charity ME Action, now AfME: “Exciting studies have recently been reported of persistent viral RNA in biopsies from patients with ME….

    Based on these observations we have started to investigate muscle protein synthesis; that is, the ability of muscle to repair itself…in patients with ME. Measurements of muscle RNA, the machinery for protein synthesis, showed consistently reduced amounts in their biopsies. Studies of whole body and, specifically, thigh muscle protein synthesis rate in these patients show reduced values and thus a pattern is beginning to emerge of persistent viral infection, and possibly re-infection, interfering with the machinery for making tissue protein and thus impairing protein synthesis”.

    Discussing the view of those who claim that changes in mitochondrial function and impaired muscle synthesis are merely secondary events due to lack of use of the muscles, Professor Peters continued: “It is hard to see how (this) can explain the persistence of enteroviral RNA in muscle fibres….immobility leads to a selective loss of Type I fibres, a feature not seen in patients with ME”.

    The same issue of InterAction reported on page 22 the neurological abnormalities found by Carolyn Warner and her team from Buffalo, NY (elevated IgG synthesis, elevated CSF cell count, prolonged visual evoked response latency, abnormal EEG and MRI lesions, and neuromuscular abnormalities including over 20% polyphasic motor units on quantitative EMG, inflammatory infiltrates and Type II fibre atrophy, these being reported in Neurology 1989:39:Suppl 1: 420).

    Commenting on these abnormalities, Dr Goran Jamal, Consultant in Clinical Neurophysiology at The Institute of Neurological Sciences, Glasgow, affirmed that those results are consistent with disturbed immune function and persistent infection, and that it proves once again that one can find neurological abnormalities if one looks."

    http://www.meactionuk.org.uk/Grey-Information-on-ME-CFS.htm

    http://www.meactionuk.org.uk/Grey-Information-Part-2.htm
     
  9. wdb

    wdb Senior Member

    Messages:
    1,377
    Likes:
    2,956
    London
    What utter nonsense
     
    alkt, barbc56, Sidereal and 12 others like this.
  10. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,677
    Likes:
    21,535
    Germany
    I've never really been convinced by Myhill, although I know she has her ardent supporters. I'm not about to jump onto her bandwagon. Could end up with another Coyne-type situation, ending with lots of emotion and recriminations. If I was choosing a saviour to follow it would be someone like Ron Davis or Jen Brea, not Myhill.
     
  11. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,238
    Likes:
    16,189
    Worth noting that there are already parliamentary initiatives in progress, involving the charity sector and the Countess of Mar, in relation to the enormous public cost of the PACE trial (Public Accounts Committee) and the development of new NHS services for people with MUS (medically unexplained symptoms/syndrome) and wider issues relating to management and services for people with ME/CFS (House of Commons Health Select Committee)

    Obtaining a Public Inqury into something like ME/CFS is going to be an extremely ambitious, time consuming and costly target

    The whole process requires a great deal of thought and planning relating to the way in which the case needs to be made

    It also requires widespread support from charities, parliamentary colleagues, sympathetic doctors etc etc

    Worth reading:
    http://www.telegraph.co.uk/news/ukn...or-a-useful-adjunct-to-the-legal-process.html
     
  12. Molly98

    Molly98 Senior Member

    Messages:
    500
    Likes:
    4,269
    Very glad to hear this @charles shepherd, this is something I find very concerning and alarming and has worsened my fear of engaging with NHS medical professionals.
     
  13. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,238
    Likes:
    16,189
    There is growing interest from the new CCGs (clinical commissioning groups) in the problem of how to manage patients who have what are termed medically unexplained symptoms/syndromes (MUS)

    They are being advised that a far more cost effective way of dealing with these patients is to lump them all together and provide a multidisciplinary service (which is often far more psychological than medical) rather than trying to have individual specialist services - as currently occurs for ME/CFS

    The private and 'non profit' heath sector is also playing an increasingly important role here - where chronic fatigue is often equated with CFS

    Example from Insight Health:

    https://www.insighthealthcare.org/our-services/talking-therapies/common-issues/chronic-fatigue/
     
  14. Jan

    Jan Senior Member

    Messages:
    398
    Likes:
    2,701
    Devon UK
    Can someone please tell me how much more evidence is needed before ME ceases to be in the 'medically unexplained' category?

    I seem to recall the IOM cited over 9000 studies in relation to ME. How much more proof is needed?
     
  15. wdb

    wdb Senior Member

    Messages:
    1,377
    Likes:
    2,956
    London
    But what have those studies proven ? There is no conclusive diagnostic test, no confirmed bio-markers, no consensus on aetiology.
     
    Last edited: Feb 17, 2017
    barbc56, Sidereal, Webdog and 2 others like this.
  16. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,238
    Likes:
    16,189
    In very simple terms the medical profession as a whole - most of whom have no in depth or up to date knowledge about research into biomedical factors that are involved in causation of ME/CFS - will continue the physical vs psychological debate (along with dumping ME/CFS into the MUS, FSS barrel) until research can demonstrate consistent and robust pathology that is clearly linked to the symptoms.
     
  17. Barry53

    Barry53 Senior Member

    Messages:
    2,277
    Likes:
    13,703
    UK
    So I guess it is a matter of biding our time until that link is discovered. I wonder if, once that point is reached, there will be some chance for restitution.
     
    dangermouse and trishrhymes like this.
  18. AndyPR

    AndyPR Senior Member

    I have no expectation of any restitution. It will be claimed that everybody was operating on the best evidence available at the time and that will be that.
     
    Tunguska, barbc56, Sidereal and 6 others like this.
  19. Barry53

    Barry53 Senior Member

    Messages:
    2,277
    Likes:
    13,703
    UK
    Unfortunately I imagine you are right. Just feels so incredibly wrong.
     
  20. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    Yep. That ole one size fits all cliche that provides the perfect escape hatch.
     
    dangermouse likes this.

See more popular forum discussions.

Share This Page