"Earlier today, the 25% ME Group announced that Dr Byon Hyde, MD, has taken up the role of Patron and Medical Advisor to this organisation for the severely affected see previous posting:"
from http://meagenda.wordpress.com/2009/11/06/dr-byon-hyde-md-reference-to-xmrv-retrovirus-in-goteborg-conference-address/ posted on November 6th
So what does that mean in light of his statements about XMRV?? Anybody have a someone they can ask in the group??
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.]