Very well written Meadowlark! It is a shame that only the CBC would receive that.
Your email probably bounced back because the CBC is probably changing to the new system that the CBC person told me was supposed to happen today. You will notice that they have closed the other stories for comment now. the thing that was so unusual in the case of the cfs article is that they wiped out all the comments. They did not do that for the other articles. They just froze further comments. New articles didn't have any comments though. But I have to question about the timing of the freezing of comments.
They got so much feedback criticizing them the last time a cfs article was posted that they probably timed the freezing of these articles to happen after they posted their propaganda. It must be an important subject for them.
This just came to my mind... I don't know when the decision was made to conduct that study, but in case XMRV is confirmed that study might be what saves many people from all sorts of consequences or at least partly. If they have at least some studies that show CBT/GET is effective or at least not harmful, they can use that as their defense and say "See, we were not totally wrong, there was just nothing better at that time" or "Our approach was not dangerous for the average patient". So they need this, if things go wrong for them.
A bad article. Nancy Klimas could have been worse, but i'm disappointed nevertheless. Finding something that gets at the underpinnings would not just be "great as well", it would obviously be much better than something that "helps a little"?!
Hi fla: "Send your feedback" is what I tried to use. Possibly my letter is too long, so I'll try that.
Boomer3, thank you for the info about the CBC's changing e-mail system and for starting the thread in the first place. Perhaps I should wipe out the part of the letter about the lack of comments, keep everything about how nonsensical it is to compare a study of UK patients with patients in the country that created the CCC, and add a query about how many science reporters there are at the website and their qualifications.
Thanks to everyone else for advice and support. I don't know if it's because I'm so fatigued, but I feel quite free to get really mad ... and quite helpless and depressed at the same time. Very weird.
I think what you wrote is very good. You could also ask how many qualified science reporters they have to allow that article to be posted ..
The Canadian Broadcasting Corporation (CBC) is a Crown Corporation of the Government of Canada. Some authorities somewhere must have given them instructions on problems posting on certain issues. But personnel changes and one day they won't allow something to be posted and the next day they do. I am sure that many medical personnel and government officials like to read the comments on health articles and I think it is a good thing to raise awareness among Canadians. They'll be more prepared for the changes.
I saw an article about five new one-stop Health Centers to be opened for Canadian military across the country on the CBC site a day or two ago and thought to myself wouldn't that be great to get funding for cfs centers some day.
I see that the CBC system transferred to a new system yesterday and the articles are still all preventing any comments. It will be interesting to see if right after the article on Exercise reversing CFS rolls off the screen, that they again open up all articles for comment.
Distribute to other forums, in case it's not already posted there:
ALERT: FRAUDULENT 'CFS/ME' STUDY - DIRE INTERNATIONAL CONSEQUENCES.
Collective International Professional Response to PACE Required?
Feel free to REPOST this to proffesionals and campainers.
I write in response to the just-published results of the UK MRC/DWP-backed PACE Trial on 'CFS/ME' in The Lancet. Which, amidst controversy and formal complaints to UK Government Ministers and the Medical Research Council claims that: "CBT and GET can safely be added to SMC [Standard Medical Care] to moderately improve outcomes for chronic fatigue syndrome, but APT [Adaptive Pacing Therapy] is not an effective addition." The full pdf version of the published Lancet PACE Trial paper is attached herewith.
Apart from rightly raised concerns about methodology, patient selection criteria and conflicts of interest, in my view, essentially what Professor Peter White et al have done with the PACE Trial is conflated two diseases that the WHO rightly categorises separately - neurological 'ME/PVFS' (ICD-10-G93.3) and psychiatric 'Fatigue Syndrome' (ICD-10-F.48.0) - and misrepresented the latter as the former.
The PACE Trial is thereby an effective response to Professor Simon Wessely's call for such an approach in his article in the British Medical Journal back in 2003 - where he misrepresented WHO ME/PVFS taxonomy as merely the patients' own "lay label" and then advocated tactics of what he called "constructive relabelling" to humour and mislead patients whilst advancing a questionable psychiatric agenda:
"Our challenge arises when patients have named their condition in a way that leaves doctors uncomfortable, as occurred with chronic fatigue syndrome. It may seem that adopting the lay label endorses the implicit causal theory and reinforces perceived disability. For better or worse, the medical profession has lost the monopoly on naming conditions, and rejecting lay terms can needlessly alienate patients. A compromise strategy is "constructive labelling," expanding on the lay name. It would mean treating chronic fatigue syndrome as a legitimate illness, acknowledging that it may have a viral trigger (as many patients report), while gradually expanding the understanding of the condition to incorporate the psychological and social dimensions." ['Managing patients with inexplicable health problems.' Simon Wessely, Baruch Fischhoff. BMJ 2003;326-595-7. doi:10.1136/bmj.326.7389.595]: http://www.bmj.com/cgi/content/full/326/7389/595 http://www.bmj.com/cgi/reprint/326/7389/595
The UK National Institute for Health and Clinical Excellence (NICE) have already said that they will review their 'CFS/ME' Guideline 53 when the PACE Trial is published: having previously refused to do so on the basis of biomedical research evidence presented to them - even though the Guideline was due for a scheduled three-yearly review last August. With the published PACE Trial results under their belt, NICE are widely expected to firm-up their behavioural guideline and make it harder for doctors to treat 'CFS/ME' patients in any way other than with CBT/GET in spite of growing international evidence contraindicating such an approach.
Their is also concern of serious conflicts of interest at the UK Department of Work and Pensions (DWP) who part-funded the PACE Trial. Like the permanent health insurance industry, the DWP has a potential financial vested interest if patients' disability can be portrayed as caused by or largely exacerbated by behavioural factors. Thus the UK parliamentarian Gibson Group on the Scientific Research into ME rightly warned in its 2006 report:
“There have been numerous cases where advisers to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUM Provident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here. The Group find this to be an area for serious concern and recommends a full investigation of this possibility by the appropriate standards body. It may even be that assessment by a medical ‘expert’ in a field of high controversy requires a different methodology of benefit assessment.” .
Such is the broad establishment head of steam supporting insurance-industry-linked psychological approaches to misrepresented patients with the neuro-immune disease classified by the WHO at ICD-10-G93.3 (ME/PVFS), that the PACE Trial results are likely to have a major adverse effect upon such patients around the world as well as in the UK. I believe therefore that a considered collective professional response to the PACE Trial from biomedical ME specialists and interested professionals/academics around the world is urgently needed: a joint statement or joint academic paper condemning what amounts to an abuse of both scientific process and international medical taxonomy. I hope that the ME community, together with responsible professionals, can work to produce such a response.
 Page 30 - The Report of the UK Group on the Scientific Research into ME (GSRME), entitled: Inquiry into the Status of CFS/ME and Research into Causes and Treatment. November 2006.] At the GSRME House of Commons Website: www.erythos.com/gibsonenquiry/index.html