More medical 'firsts' from the CDC? The CDC states in this press release (reprinted in part below): 'First of all, this is very exciting research in the field of chronic fatigue syndrome. It really is the first credible evidence of a biological basis for chronic fatigue syndrome' The first evidence?? Well, yes it is, but only if you ignore the more than a THOUSAND studies which have already done so - which of course they do. Despite all this talk of a biological basis for 'CFS' the CDC are also still recommending almost no other treatments for the illness other than psychiatric treatments such as cognitive behavioural therapy and graded exercise therapy. They also continue to define 'CFS' purely in terms of the presence or absence of fatigue. When the CDC say CFS they are not talking about people with ME but merely fatigue sufferers, and so anything they come up with is IRRELEVANT to MEers anyway. This is so clear if you just read anything they've put out lately (or ever.) As advocate Craig Maupin explained recently in his article: 'There's More to the CDC's Conclusions About CFS Than Meets the Eye' The CDC's Wichita CFS research subjects don't appear to be very disabled. At the press conference, Reeves touted the fact that 84 percent of the Wichita samples his staff had evaluated to have CFS didn't even know they had any illness, much less chronic fatigue syndrome. And according to a CDC study published in 2003, the average combined workload (employment and chores) of those diagnosed with CFS by the CDC's research definition was close to 48 hours per week. Apparently, these Wichita CFS sufferers, diagnosed by using the CDC's 1994 research definition, are running circles around many healthy people. Do these sound anything even remotely like people with actual M.E.? Do you think even ONE person with ME could have the illness and not even KNOW they were ill? Do you think anyone with current ME could work anywhere even close to 48 hours a week? Of course not. It seems very unlikely that ANYONE the CDC looked at even had ME, and certainly the overwhelming majority of them (at least 84%) very clearly did not have the illness. There is no grey area here. These studies were not done on ME patients and so the results are in no way relevant to ME patients, end of story. Don't be fooled by the use of the term 'CFS' - as we should be well aware this term means very different things to different people. When the CDC use the term CFS they are NOT discussing an illness that is equivalent with ME but an entirely UNRELATED patient group which consists of psychiatric and non-psychiatric fatigue sufferers. Don't be fooled! Talk of biological findings is meaningless if made by vested interest groups like this. Depression has biological findings too! This is all just smoke and mirrors to make us think they have changed their ways when the reality is that they are more committed to denying us our basics rights and pretending that we are psychologically ill (and are exactly the same as tired and stressed out people) than ever. What the CDC are actually saying to the world is that 'CFS' is a psychological illness caused by stress. The more than a thousand studies - on actual ME patients as opposed to a group of mildly fatigued people - which refute this are of course completely ignored by the CDC. Some MEers however have bizarrely responded to this damaging nonsense as if it were a great step forward for our cause... How is is that so many MEers still don't get that the CDC are NOT in any way interested in helping ME patients or in furthering any type of legitimate research and indeed that what they do best is ignore or bury legitimate research or anything that might actually help us... Their goals are the direct opposite of ours - by supporting the CDC you're actually working directly against the best interests of ME sufferers; that is just a fact. (And forget the suposed credibility being given to this reaserch by it being supported so uncritically by The CFIDS Association as this group is funded to the tune of millions of dollars by... guess who? The CDC themselves! Their support of this poor quality pseudoscience is worse than meaningless.) The CDC could very easily choose to do useful and legitimate research on actual ME sufferers instead of psychiatrically based pseudo-science on mildly fatigued people. ME sufferers are quite easy to recognise and have little in common with those suffering psychiatrically based (or any type of) fatigue. Yet the CDC do not do this, they are still pretending that fatigued people and people with ME are one and the same. This speaks volumes not only about their intentions but also about how relevant any of their research results are to ME sufferers. These studies on fatigued people who do not have ME are no more relevant to ME sufferers than they are to those with MS, diabetes or Parkinsons. That is a fact. As Hillary Johnson, author of Osler's Web, (an activist many of us admire and who I hope wont mind if I quote her), wrote about Straus from the CDC a while back: 'Now, why is M.E. considered so widely to be "poorly understood" and "controversial"? Because Straus has engineered this very propaganda. Because he says so, again and again, ad nauseum. Any study that advances understanding of the disease, like the comprehensive 1992 Annals study I mentioned a while back, Straus has either blithely ignored or publicly undercut, along with the CDC. It is he who turned a simple infectious disease into a "controversial" one by suggesting it is not a bona fide disease at all, but a state of, yes, FATIGUE powered by maladaptive thoughts.' and: 'Reeves should have been sent to jail in the mid-1990s. The CDC shouldn't even be involved in ME; after the profoundly botched (nefarious?) Tahoe "investigation" of 1986-87, the Secretary of Health should have banned the agency from further activity in the field and fired the scientists involved. (In a rational world.) I'm tired of saying this. I really am. PWMEs who think it's reasonable, at this late date, to try to negotiate for help with this agency or any other agency or person employed in the DHHS are complicit in their own demise and threaten every other PWME, as well, by propping up the status quo.' The CDC are who we need to be fighting AGAINST, not for. Read Osler's Web! Read anything the CDC have said about ME over the last 20 years... it's all there... The CDC are the reason why we need any activism in the first place... for MEers to actually be supporting them in this, supporting and increasing own abuse... it is just pure madness. Jodi Bassett, April 23 2006 ps. These same exact comments also apply to the recent 'research' put out by Andrew Lloyd in Australia about 'CFS' being caused a temporary hit-and-run type injury to the brain due to glandular fever. What Lloyd is discussing here is a post viral fatigue syndrome, not ME. ME is not a state of 'fatigue'following glandular fever, this is a separate problem entirely. This research has nothing to do with ME patients at all and again this research is nothing more than Lloyd yet again pretending that 'CFS' is a psychological condition which is amenable to psychiatric therapies such as CBT and GET. It has been very disheartening and depressing to see how many ME sufferers in Australia (and worldwide) have actually treated this dangerous and unscientific propaganda as legitimate science on ME that we should actually be thankful for. Nothing could be further from the truth. (This article is reprinted in part below) Again, Wessely, Lloyd, Hickie and the CDC (etc) are the actual reason people with ME are so poorly treated and abused in the first place. Supporting these vested interest groups means supporting and further entrenching our own abuse... There is so much real research out there we should be supporting instead of this unscientific and harmful psychiatric nonsense, it really isn't so hard to see the difference between the two if you just take a bit of time to see past the surface of what is being said and look at the nefarious history of many of the individuals and groups involved and where their interests and motivations really lie. It is so important that we do this as a community, if we are to ever get anywhere in stopping the appaling abuse and neglect of so many thousands of ME sufferers. Education is key.