Excellent work Jeannette
The IOM contract to redefine ME/CFS
Some emails have been sent to senior IOM staff and HHS staff explaining the conflict of interest, bias, contradictions in consistency and accuracy and the lack of independence of IOM in this matter.
Dear Kate Meck, (IOM)
thanks for your reply. That's excellent to see that my communication is in the public record. I would like to include further information for the public record.
The IOM has stated it's position on ME/CFS in the GWI report this year. I include evidence of this below:
http://books.nap.edu/openbook.php?record_id=13539&page=97
http://books.nap.edu/openbook.php?record_id=13539&page=98
http://books.nap.edu/openbook.php?record_id=13539&page=99
http://books.nap.edu/openbook.php?record_id=13539&page=100
The IOM itself is now conflicted and cannot under American law be part of any attempt to re-define ME/CFS. Any IOM involvement would mean conflict of interest, bias (in favour of NICE guidelines, CBT, GET, psychiatry, and IOM’s approval of these), and lack of independence. Furthermore, there is additional bias, as IOM failed to consult the 5,000 research papers into ME/CFS detailing biological abnormalities, dysfunctions and infections in the formation of it's GWI report. IOM may become guilty of inconsistency and inaccuracy, as it's stated position on ME/CFS in the GWI report may differ from it's position in the ME/CFS report. From these scientific and legal facts, and stated position, the IOM cannot be fully trusted to form a panel, as there are questions relating to the IOM’s conflict of interest, bias, consistency, accuracy and independence. The IOM’s definition of ME/CFS (included above) in the GWI report this year, means the IOM will have to remove itself from the attempt to re-redefine ME/CFS. Thus the IOM cannot legally participate in its own study.
There are further aspects to this relating to balance and fairness, and to matters of 'Public Interest'. There is a memorial section on a web site to those people who have died of ME/CFS and it's health complications at
http://www.ncf-net.org/memorial.htm . The seriousness of an illness can be gauged from the number of people who die of the illness and the many health complications it causes. This issue involves the death of innocent Americans and thus is a matter of vital 'Public Interest' and also of national security. One should contrast this level of seriousness with the insulting, degrading and mocking attitudes and views of the wessely school psychiatrists who are behind the failed NICE guidelines in Britain ; the same guidelines which IOM supported in its definition of ME/CFS in the GWI report and has now included in it's ME/CFS re-definition work. Here is one example of the mentality and motivations of those people who created the NICE guidelines and support psychiatric bias.
" In December of that year, the British Medical Journal continued its campaign of misinformation about ME/CFS in an article co-authored by Michael Sharpe (“What should we say to patients with symptoms unexplained by disease? The ‘number needed to offend’ ”. Jon Stone, Alan Carson, Michael Sharpe et al. BMJ 2002:325:1449-1450). The authors calculated an ‘offence score’ of descriptions pertaining to patients who are deemed to have no disease; those descriptions included ‘putting it on’; being ‘mad’, or ‘imagining symptoms’. The authors noted that the term ‘hysterical’ was the only one on their list that specifically excluded malingering. The conclusion was that many of these labels did not pass the ‘offence’ test, so the best label was ‘functional’ disorders, as this label “provides a rationale for pharmacological, behavioural and psychological treatments aimed at restoring normal functioning”.
The electronic responses to this article included one from Douglas Fraser, a professional violinist unable to work due to ME/CFS: (“The very fact that you are reduced to implementing yet another euphemism should alert readers to the reality that the concept hiding behind it is as ludicrous as it is offensive”); Tom Kindlon from the Irish ME Support Group: (“if the BMJ is going to publish papers like this, it should also publish information about how patients with many currently recognised diseases would have been told in the past that their symptoms were ‘medically unexplained’ or ‘hysterical’, (and) then some doctors might be more willing to say ‘I don’t know what is wrong with this patient’ rather than to conclude ‘this patient’s symptoms are functional / hysterical / all in the mind’ (or whatever euphemism is in fashion at the time”); "
Source: CORPORATE COLLUSION?, Hooper et al. (2007)
There are many, many examples of insults, abusive comments, lies, and deceptions by wessely school psychiatrists, the same people who drew up the ineffective NICE guidelines. No Federal body, and indeed no American government body should support such outrageous abuse of medicine and science, and abuse of seriously ill patients.
The IOM should by itself or in referral back to the Secretary of the HHS immediately call for the implementation of the Canadian Criteria 2003 in the USA as advised by the 50 leading ME/CFS medical doctors and researchers. And a retraction of its support for NICE guidelines in defining ME/CFS in it's GWI report. This would preserve the prestige, integrity and honor of the IOM and enable many Americans to get the diagnostics and treatments they need, and assist the research efforts of scientists in the USA and around the world.
Best Regards,
David Egan.