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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Dr. Hyde on XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Cort, Nov 6, 2009.

  1. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Hi George and all,

    There is discomfort also in the UK around the tone of Byron Hyde's address to the Swedish ME Conference, especially coming on the heels of yesterday's announcement by the 25% Group that Dr Hyde has taken on the role of Patron and Medical Advisor to this UK patient organisation for the severely affected.

    I had to read the section on the WPI study in the PDF of Hyde's conference address through three times in the hope that what I was reading was not sour grapes.

    I am not a member of the 25% Group, myself, but as a website owner, I've just written to Simon Lawrence, Chair of the 25% Group management committee, for the group's position on the XMRV study findings and to enquire whether the group is intending to issue a position statement. If Simon does issue a statement on behalf of the group, I will post a copy or a link, here.

    Jodi Bassett has recently launched "The Hummingbirds' Foundation for M.E. (HFME)" - "a new international M.E. charity". Her organisation was founded in May 2009 but the founding members have yet to be named.

    Jodi and two colleagues who contribute content to her site are calling for "CFS" and PVFS to be split from ME at G93.3, in the forthcoming revision of ICD-10.

    See: The WHO ICD in relation to M.E. and CFS Long version Copyright Lesley Ben, August 2009 http://www.hfme.org

    Jodi is a champion of Byron Hyde. I don't think Jodi has issued a position statement on behalf of her new organisation (or a personal statement) following the publication of the WPI study, in Science - I stand corrected if she has. Jodi is in Australia, which I understand will be moving, like the UK, on to ICD-11, which is timelined for implementation by 2015. (But the US will be implementing ICD-10-CM in October 2013.)

    The UK children and young person's organisation "The Young ME Sufferers Trust" is headed by Jane Colby. Jane is reported as having called, at a meeting of the Countess of Mar's APPG on ME caucus group "Forward-ME", that "CFS" should be split from ME. Jane Colby's organisation has also championed Hyde's definitions - as has the UK organisation, Invest in ME.

    Not being a member of the 25% ME Group, I am uncertain what the 25% Group's position on this issue is and it's not yet known what proposals (if any) the group might be intending to submit to the ICD-10 drafting process and whether they will be consulting their members, first, if they intend to submit proposals. [Proposal forms for ICD Chapter V and Chapter VI are expected to be issued within the next couple of weeks.]

    Suzy
     
  2. _Kim_

    _Kim_ Guest

    Hi Suzy,

    Welcome to the forums here. Thanks for filling us in about Hyde and the 25% group. I hope you'll continue to contribute.

    ~Kim
     
  3. Michael Dessin

    Michael Dessin Senior Member

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    Weldman

    Ur hysterical thing was funny!!! :D


    Hyde is actually a good dude. People give him a hard time because he goes against the grain a bit.

    I agree with his assessment that enterovirus is a likely trigger.

    Mike
     
  4. Cort

    Cort Phoenix Rising Founder

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    With regards the money my understanding is that he is amongst expensive of doctors to visit; the first couple of days costing over $10,000 - that's what someone informed me.

    Dr. Hyde appears to be focused on a small subset of patients that he believes are true ME patients. The rest he believes have either undiagnosed illnesses or something else (CFS). Clinically he seems quite adept but there have always been inconsistencies that worry me.

    He basically lead the fight against 'fatigue' in ME/CFS stating that it was not an important symptom but when you look at the accounts of the original outbreaks fatigue or exhaustion is mentioned prominently.

    If you read the entire speech I think you'll read that at some point he states that teachers and health care workers make up a significant portion of ME patients - possibly because of his focus on that 'ME' group.

    While he obviously has real insights into this disorder he seems incapable of presenting them in an organized fashion and he goes off on strange tangents at times; aka his emphasis on finances when what we really want to hear about is biology! He's a bit of a loose cannon to me.

    I read him for his insights into physiology which I think are fascinating. He was the first to really target the vascular system and he did it a long time ago. He's always been very focused on the brain and central nervous system - again a forerunner in that.

    Something happened at some point with him I think; he was the lead author of that first big good book on ME/CFS and he really seemed poised to lead the field but he never really has.
     
  5. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Hi Warbler512 and all, and thank you for your welcome, Kim,

    I'm not sure if you are asking whether "CFS" has become the "British definition of ME" or whether Hyde's own definition has become the "British definition of ME". But Hyde was not invited by the UK Parliament to present his own definition and no definition of Hyde's has become the "British definition of ME".

    I hope you won't mind my clarifying the status of the "Gibson Inquiry", which will take us Off Topic, but I think it is important that the status of this inquiry is properly understood outside the UK. This post also includes at the end some information from Dr Hyde, himself.

    The "Gibson Inquiry" has been erroneously promoted as a "Parliamentary Inquiry" both in the UK and beyond.

    It was not.

    The inquiry was instigated by former Labour MP for Norwich North, Dr Ian Gibson. Dr Gibson had been lobbied by Prof Malcolm Hooper and several ME advocates in the Norfolk area. His response had been, initially, to call for a "high level" independent inquiry that would "get to the bottom of ME/CFS, once and for all" - whatever he meant by that.

    When he was unable to secure a high level inquiry within the very short time-frame he had set for himself, he announced that instead, he would set up and conduct an inquiry himself and he would select and chair its committee.

    There were huge issues over what the scope of the inquiry should be, who would be invited to sit on his panel, who the experts would be, how the inquiry would be carried out, how it would be decided who would be invited to give oral evidence, and many other issues. Dr Gibson was intent on doing things "his way" and he did not properly consult with the ME community over how this project would be carried out, what its aims and objectives would be and the drawing up of its Terms of Reference. He did not pause to ask whether this level of inquiry would be a suitable substitute for the full and high level inquiry he had promised to secure on behalf of the ME community, or whether we would prefer to wait until a high level inquiry could be secured - he just ploughed on...

    It a nutshell, it was a fiasco from start to finish and this poorly written report remains littered with uncorrected errors, misconceptions, ambiguities and contradictions.

    Dr Gibson set up an ad hoc APPG group for the duration of the project. In terms of status, this type of group is on the lowest rung of parliamentary committees - an APPG group not on the "Approved Register".

    Dr Gibson drew his panel from members of the House of Lords and members of the House of Commons - there were no external experts of any kind and the inquiry that this panel undertook was accountable only to Dr Gibson. The Office of the Parliamentary Commissioner for Standards has confirmed that the inquiry and the report that came out of it does not have the authority of Parliament and that it is an unofficial report published by a group of parliamentarians.

    Because the inquiry was not commissioned by Parliament or by any govenment department or carried out by a Standing Committee, Select Committee or any other type of Parliamentary committee, no government department was obliged to respond to the recommendations within the report and none of them did.

    There was no funding allocation for the project and no dedicated administrative staff. The panel were overwhelmed with submissions. The panel also significantly exceeded their remit, for example, becoming prescriptive around medications and allowing themselves to become bogged down in areas that they were ill equipped to involve themselves in. There were many areas they could have "safely" scrutinised and reported on, but did not. But then the Terms of Reference had not been drawn up in consultation with the ME community. Parts of the report are shockingly ill-informed.

    So it needs to be understood that the report was an unofficial report, published by a group of parliamentarians accountable only to a former back bencher, Dr Ian Gibson, and not a Parliamentary Report resulting out of an official Parliamentary or government inquiry or an independent, commissioned inquiry - which is a completely different kettle of fish in terms of status. Gibson has chaired other unofficial inquiries which have led to formal inquiries being undertaken - but the report of the GSRME was not one of them and the report has pretty much sunk without trace. The panel was not even prepared to stay convened long enough to correct the factual errors and misconceptions that all the national patient organisations had brought to its attention.

    Having met with Dr Hyde, Dr Gibson had evidently invited Hyde to produce a document to feed into the inquiry, although the nature of this document and how it was to relate to the inquiry, itself, whether it was intended to serve a purpose beyond the inquiry and if so, what that purpose would be, were never defined by Dr Gibson or discussed with the inquiry's constituency of interest.


    Dr Hyde missed the boat

    Dr Hyde completed his document too late for inclusion in the "Gibson Report" and there is no mention of any Definition as a work in progress in the report, itself.

    When Dr Hyde finally published the document:

    http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf

    in the preface, he dedicates it to Dr Gibson and sets out that he had attended two meetings with Gibson and had been invited "to prepare a report that might assist the committee in its further deliberations."

    Dr Hyde lists the members of this unofficial GSRME panel in the preface under the two headings:

    The House of Commons Committee on M.E.

    The House of Lords Committee on M.E.

    This is misleading.

    The inquiry was not conducted by "The House of Commons Committee on M.E." or "The House of Lords Committee on M.E." it was conducted, as I have set out, by an unofficial committee set up by Dr Gibson who had invited three members of the House of Lords (one of whom was the Countess of Mar who attends APPG on ME meetings) and four Labour MPs and one Independent MP, to make up the panel - a panel that had no accountability to any government or Parliamentary Office or Agency.

    Perhaps it is the case that Dr Hyde did not fully understand the status of the inquiry and the unofficial nature of the report that resulted out of it and not that he sought deliberately to aggrandize its status.

    I have also seen reported, in the US, that meetings and oral hearings for the inquiry were held in the "House of Commons" or in the "UK Parliament".

    They were not.

    They were held informally in Portcullis House and House of Commons committee rooms. For some of these meetings, no Minutes or recordings exist because of poor administration; two of the oral hearings were held virtually in camera because Dr Gibson's admin guy (who later walked off the job taking his meeting notes with him) did not bother to circulate notices of the dates, venues and agendas. Consequently, very few members of the public attended two of the public oral hearings, one of which had included presentations by Chalder, Cleare, Kerr, Spence and White, because they did not know when they were taking place.

    Incidentally, Dr Gibson (who had to be lobbied to extend an invitation to Dr Nigel Speight) had invited Prof Simon Wessely to present at an oral hearing or to submit a Written Submission.

    Wessely declined to do either. Instead, he sent what Gibson has described as a "personal letter not intended for publication" of considerable length to the panel. In late 2007, I approached Dr Gibson with the suggestion that this document should be placed in the public domain since this was a public inquiry and could this be discussed with Prof Wessely. Wessely's response was that he "...was in agreement with Dr Gibson that the letter should not be released".


    A rumour of "UK government funding"

    In June 2008, I had cause to contact Dr Hyde for clarification of something I had read on an internet website - a claim that the "UK government" had offered Hyde a considerable sum of funding to set up studies in the UK.

    In his response, Dr Hyde told me that:

    ...what had happened was that at a meeting in Westminster, Dr Gibson had stated that if "we" could set up a program to properly investigate M.E. patients in the UK similar to what [he] did in Canada there was a potential 15,000 pounds sterling that Dr Gibson would try to shepherd through for such a plan and that he had at least one hospital in the UK who had been positive in assisting such a model.

    Hyde said that he had replied at the time to Gibson that he could not risk going to the UK on his hope of this matter succeeding. However, if he could raise $1,200,000 in Canada and possibly the USA, independent of the UK, he would go to the UK and hire the research staff if he could obtain medical status and with the help of UK hospital personal work for 2 years to achieve the goal of setting up a proper clinical research system. This would not be easy even then, he told me, since he believed that the UK health system is fragmented and there are many hostile elements to taking this group of patients seriously, particular in some branches of medicine.

    He had also told Gibson, he said, that the chance of his raising that kind of funding in Canada (1.2 million) was not very good and that so far this had proved to be true.

    I had questioned Gibson's ability to secure the considerable sum of funding that had been quoted in the internet article which had prompted my approaching Hyde for clarification.

    In response, Hyde said that he felt I was in part mistaken about the ability of "the Parliament and their various committees" to find such "modest funds as 15 million pounds sterling" [his words]. That he had a very good friend in Canada who had received, he believed, circa 40 million pounds in 2007 from a UK government group to study climate change in the Congo river basin. In those terms, he considered, 15 million pounds to be spent on ill British citizens in the UK was "minimal".

    Mmmm.

    He said he had told [an ME advocate] and [Gibson] that it was highly unlikely that he would be able to raise these funds and that he would try once again in September [08] to raise the funds but was not expecting miracles and that he hoped I could correct any errors in the M.E. press on this matter.

    Invest in ME will know far more about these negotiations between Gibson, Hyde and Hooper than the little that I have gleaned.

    I wasn't sorry, to be frank, when Gibson recently announced he was standing down as MP for Norwich North. Even after the "Gibson Report" I never felt he had properly grasped the poltical issues around ME and he was a great one for making vague allusions in the media to having "gathered together the researchers" with never any evidence that there were solid sources of funding to be drawn down for this.

    Suzy

    http://meagenda.wordpress.com
    http://twitter.com/MEagenda
     
  6. jackie

    jackie Senior Member

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    Hi Mike! Been trying (desperately!) to follow and understand this thread...but I'm still pretty foggy!

    I think I remember you have a connection to Dr. Chia....does this info mean that HE is correct Re: enteroviruses? And the 1st -2nd/two viral hit theory? (or whatever the heck he calls it!?)

    He has had me on 3200mg. Acyclovir for 3.5 yrs. (but too much pain to add immune-modulators, unfortunately...so just the acyclovir).

    I know that Dr. Bell said he has the highest regard for Chia (but I can't tell if he agrees?!)

    Wondering if Dr. Hyde knows of his (chia's) work? As for Dr. Hyde...can you imagine a Doc showing up at your HOUSE - interviewing you for 4-5 hours AND then showing up AGAIN a few days later to REASSESS you? No wonder about his costs.

    Also, what is YOUR take on Chia/Enteroviruses/XMRV? Or do you or anyone else here know of Chia's "opinions" re:XMRV?

    I'll be seeing him on Mon. for 4 month appt. Which, if you know him, is always a challenge - the guy is brilliant and NOT so easy to keep up with! I intend to bring all of his "views" back here. Thought it would be important if any of us lucky enough to see some of the "players" can report back?

    Wish we had a comparison "chart" of some kind - with mainsteam Doc's vs Alternative Practitioners, their various protocols/treatments AND which of those here were participating (where they could post their results) AND have it all in ONE spot! That's not asking TOO much, is it??:eek:

    Of course, maybe we do ....and I just haven't found it! ;)

    thanks.....jackie:cool:
     
  7. shrewsbury

    shrewsbury member

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    hi jackie - loved your idea and didn't know the answer so I posted the above into the Nuts and Bolts section. Hope that's ok with you. And hope it either exists or someone will want to do one!

    if:)
     
  8. Marylib

    Marylib Senior Member

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    No treatment?

    So am I correct in understanding that Dr. Hyde offers no treatment to the patients he diagnoses with ME? Surely I don't have this right -- many people benefit from symptomatic treatment, if they can tolerate it.
    Just wanting clarification.
     
  9. Kati

    Kati Patient in training

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    Cort, for a Canadian his fee is 3000$ and includes some tests that would be normally covered by our health plan.

    He explains the fees covers for his work while I am not in his office.

    I am certain Dr Peterson would cost me more than that.
     
  10. Kati

    Kati Patient in training

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    Dr Hyde sees 10-20 new patients a year. He will diagnose, refer you to local dr that agrees to follow his recommendations, also you will get imaging done in your community and he will direct your care from his office to the dr.

    Since I live on the other side of the country, it's better like that.I believe he does a review in person every 6 months or so.
     
  11. Sing

    Sing Senior Member

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    Hyde's Fees

    Hi !

    I inquired two years ago about Dr. Hyde's services and fees. It is one thing for Canadians and another for US or non-citizens. Different rates also apply for people in different provinces in Canada as their national health coverage takes different forms in each province.

    As I am a US citizen, I was told the charge would be $10,000 for a thorough diagnostic workup over 2 or 3 days, then that he would lead my case for 18 months and I would be seen for periodic follow up appointments. I would have to have a whole range of specific tests done where I have insurance coverage, meaning that I would have to push my providers there to order the exact tests (some non-standard and some quite expensive) so this would take a lot of initiative and work on my part. He "would work with" my doctors to have this happen. His fee would cover all this and the few tests he could do in his office. He would not treat. But at the end, the idea was that I'd have a firm diagnosis (or diagnoses) which I might be able to use in court to support a disability or insurance claim.

    His secretary is glad to answer any of these inquiries if anyone wants to find out what the deal is now.

    Cecelia
     
  12. Sing

    Sing Senior Member

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    Reply to ME Agenda

     
  13. shrewsbury

    shrewsbury member

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    Hi Kati

    It's great that you will see Dr Hyde. He's one of the pioneers and has made good contributions to the field. I'd say his xmrv reaction is not all one could hope, but he's not alone in this; many people in the field seem a little too human these days.

    Part of the nightmare of this illness is that there is no known cause and no treatment. Just finding and getting in to see a doctor, let alone a specialist, that knows about ME/CFS and settling disability/insurance issues when one is at the lowest functioning of one's life are difficult tasks.

    You can see on this forum the wide range of hypotheses different doctors are coming up with and treatments they're trying. And that most of the doctors have to act alone. Also how most patients are continually trying whatever research is showing may have a chance, even if most of it is symptom treatment.

    I hope Dr Hyde is helpful for you. And of course, if there's any info you would care to share, you know there are many here eager to hear.

    if:)
     
  14. Kati

    Kati Patient in training

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    Island Finn, I hope to see him- we shall see if I'm "accepted" Sent out the application last month. It would certainly be a long exhausting trip in my current condition. Did I mention expensive?



     
  15. shrewsbury

    shrewsbury member

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    My hopes (and many more I'm sure) are with you Kati.

    I've found, gulp, that I've had to swallow my pride and arrange for wheelchair service. It's free and they're very nice. hmmmmmm, do I sense a "travel tips" thread coming?

    Expensive - ouch:(:(:(:confused::confused: It just doesn't seem right, does it.

    if:)
     
  16. Aftermath

    Aftermath Guest

    $10,000?

    Ten thousand dollars? This is just crazy.

    Spending that kind of money on any physician right now is just nuts.

    The fact is that no one currently knows what causes this illness (although thanks to WPI, it looks like we may have an idea).

    In my fifteen years of being involved with this illness (involuntarily of course), I have yet to hear of any physician who consistently provides patients with reliably positive improvements.

    I know what it's like to feel awful--any of us would give our last dollar to feel better. Still, after having thrown good money after bad having seen a good number of the notable ME/CFS specialists and getting next to nowhere, I am holding off on any more doctor visits until medicine actually knows something about this illness.

    I urge others to do the same.
     
  17. Cort

    Cort Phoenix Rising Founder

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    I assume that Dr. Hyde throws the kitchen sink at you - which is not bad if you can afford it - partially because he has found that some people with ME/CFS have undiagnosed X,Y or Z illness. That's why I think he's probably a really good clinician - it sounds like he really digs in there.

    I would think that many people with good insurance kind of duplicate that experience as they go from specialist to specialist doing every kind of test under the book. Of course for many of them nothing ever really shows up.

    I've never had that kind of money to spend on ME/CFS. In fact I don't really have any money to spend on it!

    I understand what Aftermath is saying; someone did say that even with all the tests his success rate is low. Its always a crap shoot and there's alot of money on the table.
     
  18. Hysterical Woman

    Hysterical Woman Senior Member

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    Hysterical Women

    Hi Mike,

    Funny, I didn't mean it to be funny! :)
     
  19. Hysterical Woman

    Hysterical Woman Senior Member

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    causality

    I desperately hope so!
     
  20. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    I just read at WPI Facebook that de Meir Leir is soon crossing Belgium and Sweden for 4 days of lectures on XMRV. I don't think he would need four lectures to say "this paper will wind up in the trash can" without any coherent argument, so it seems his remarks will be more interesting than some peoples'!

    That's a wrap, almost, no? Who is left who hasn't sounded off or made some remarks at CFSAC? I can think of a couple from the bacterial side of things but I think they will stay quiet for now.
     

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