This page contains 3 articles on this topic:

• More medical 'firsts' from the CDC?
• The CDC/CFIDS Association 'Faces of CFS' campaign 
• M.E. advocacy and 'CFS' advocacy are not the same
• For more information

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 one advocate explained recently:

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. 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. (Reference)

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

• Note. 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)

(For more on CFS politics in Australia see also: My comments about the current (worrying) state of Australian ME societies)

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.

For more information and articles on the CDC etc. by other authors  see the section below.

Press Briefing on Chronic Fatigue Syndrome
Date Thursday, April 20, 2006

MR. SKINNER: Thank you for joining us today for this conference call where
we're going to be updating you all on some important research that we're
publishing in a journal on chronic fatigue syndrome.

With us today is the director of the CDC, Dr. Julie Gerberding, and two of
our principle chronic fatigue syndrome researchers here at CDC, Dr. William
Reeves and Dr. Suzanne Vernon.

To start the call, I'd like for the director of the CDC, Dr. Julie
Gerberding, to talk a little bit about CDC's work around genomics, why it's
important, and what we're doing here at CDC with genomics.

You'll find later, in talking with Dr. Reeves and Dr. Vernon, that genomics
played a pretty important role in this particular study that they're going
to be talking about, and this is just one of a number of examples of
important research going on at CDC around genomics and the role that it has
in health.

And so Dr. Gerberding is going to spend a few moments, right now, just
speaking about the big picture here, when it comes to CDC's work and
genomics, and how important it is.

So Dr. Gerberding, I'll turn it over to you.

DR. GERBERDING: Thank you. Can you hear me okay?  Tom?

MR. SKINNER: Yes.

DR. GERBERDING: Thank you. I'm delighted to have a chance to introduce to
you Dr. Reeves and Dr. Vernon, who will be presenting the details of their
work that's just been published.

But I wanted to frame this in three ways. 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,
that's come out in 14 articles, simultaneously, in the journal
Pharmacogenomics. And I think it really reflects a remarkable confluence of
a number of scientific advances really coming to bear on a problem of great
importance to many people around the United States and one that's had
controversies in the past.

[continues...]

Hit-and-run injury to the brain
28 February 2006
Professor Andrew Lloyd

http://www.unsw.edu.au/news/pad/articles/2006/feb/Hit_and_run.html

A seven-year tracking study has prompted scientists to suggest that chronic fatigue syndrome could be the result of brain injuries inflicted during the early stages of glandular fever.

[continues...]

Stress aggravates symptoms but does not cause them, a condition no different in CFIDS from that in other illnesses. Walking on a twisted ankle may aggravate the pain but did not cause the twisted ankle originally. Dr David Bell MD: A Doctor’s Guide to CFIDS

It is a fact that the majority of M.E. patients are not in high-stress occupations as the popular press frequently suggests, but are teachers, nurses, physicians, and other health care workers. This group represents those most closely related to infectious illness, frequent immunisations and those most frequently immunised. The Clinical and Scientific Basis of ME Dr Byron Hyde p. 115

There appears to be somewhat of an occupational bias towards teachers (students) and health care workers in the incidence of Myalgic Encephalomyelitis cases (and outbreaks). These higher risk groups do not work in environments which are more stressful than the average job, but these are jobs which require higher rates of immunisation than others. This relationship with inoculation is often seen in infectious illnesses. Paraphrased from The Clinical and Scientific Basis of ME Dr Byron Hyde MD

For more information on this see: On the supposed role of 'stress' in ME...

Reference:
*Fairness in Advocacy* by Cort Johnson
Help ME Circle, 18 June 2007
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0706c&L=co-cure&T=0&P=7819

A response:

M.E. advocacy and 'CFS' advocacy are not the same

The terminology of M.E. and 'CFS' (and CFS/ME, ME/CFS, CFIDS and ME'opathy) is a minefield for the uninitiated.

Many of the worst articles on fatigue sufferers incorrectly claim that M.E. is just another name for CFS, and although the vast majority of 'CFS' research is utterly irrelevant to M.E., some of the best research into M.E. has unfortunately been done under the term CFS.

Even worse, more and more often, made-up terms such as 'CFS/ME' and 'ME/CFS' and ME'opathy etc. are being used to refer to patients with psychiatric fatigue, non-psychiatric fatigue, post viral fatigue syndromes and just about any other patient group (or combination of patient groups) that can be misdiagnosed as 'CFS' – as well as M.E. patients.

The terminology of M.E. and CFS has become very muddied (as was no doubt the intention of those vested interest groups who created this mess).

But what is very clear is that the DEFINITIONS of M.E. and CFS are very different.

Myalgic Encephalomyelitis (as per the historical records of the outbreaks of M.E., the work by Ramsay, Richardson, Dowsett and Hyde and so on, and the WHO ICD) is a distinct neurological illness which occurs in epidemic and sporadic forms, is linked with Polio, and associated with many different abnormalities visible on testing (including abnormal MRI and SPECT scans of the brain, abnormal responses to tilt table testing, abnormal exercise testing, reduced circulating blood volume, low natural killer cells and low cytotoxicity of NK cells, and so on).

CFS, in contrast (according to each of the most popular CFS definitions; Fukuda, Oxford and Australian) is not a distinct neurological disease, nor any type of distinct disease at all. The definitions of CFS describe a syndrome that does not exist; a mere diagnosis of exclusion or a wastebasket diagnosis. The fact that a person qualifies for a diagnosis of 'CFS' (based on any of the CFS definitions) is meaningless. It does not mean a person has M.E., nor any distinct disease named 'CFS.'

As Dr Byron Hyde explains: ‘Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. The CDC definition is not a disease process. It is (a) a partial mix of infectious mononucleosis /glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance.’

For more information on this see:

http://www.ahummingbirdsguide.com/misdiagnosis.htm

Anyone who claims to be an advocate for M.E. patients MUST use the terminology correctly, and make the appropriate distinction between the definitions of M.E. and CFS, far more importantly. Without exception. (Made up terms such as CFS/ME, ME/CFS, CFIDS and ME’opathy only cause confusion and harm and must be avoided by legitimate M.E. advocates entirely; these terms serve no constructive purpose.)

It is not helpful (or logical or ethical) to claim that you are advocating for people with M.E. if you readily accept that any science whatsoever relating to people suffering 'fatigue' or who qualify for a ‘CFS’ misdiagnosis – no matter how flawed and no matter how much additional harm and abuse it will cause to people with authentic M.E. – is relevant in some way to people who actually have M.E.

The CDC's latest research (including their enormous new prevalence figures) does not involve M.E. patients in ANY WAY. It is not M.E. which is being studied, nor is it patients with M.E. that have been counted. The fact there are four million people with mild tiredness is no more relevant to M.E. sufferers than to people with MS, Lyme disease, or anything else. These facts are abundantly clear to anyone familiar with even the basics of M.E., or should be.

This new CDC research (like all the old CDC research) does not involve an infectious neurological disease that may be tested for using a variety of objective tests. In contrast to M.E., there are no tests for the illness the CDC calls 'CFS' (and of course there never will be as 'CFS' is not a distinct disease but merely a man-made disease category containing a ragbag of patients with many different unrelated illnesses). M.E. is defined by acute and testable changes to the brain caused by a virus (most likely an enterovirus), fatigue is not a defining or even essential symptom of M.E. CFS is defined by gradual onset, medically unexplained 'fatigue' and an absence of positive test results. (If a patient has serious abnormalities on testing, they no longer qualify as having 'CFS')

Patient advocates must decide which patient groups/s they are supposedly representing. So many groups and individuals are being allowed to have it both ways, which is why people with M.E. are still subject to so much abuse and neglect.... and why NOTHING is changing for the better! People who mix together ME and CFS help NOBODY at all... except maybe themselves.

If you want to advocate for M.E. sufferers, that's great! Make sure you distinguish appropriately and unambiguously between M.E. and CFS in terminology, definitions, and history and you'll be doing good work in no time! It's not that hard, really it isn't, all you need to do is just a little reading.

However, if you want to support the flawed (and often psychiatrically biased) work the CDC (and others) are doing into heterogeneous groups of fatigue sufferers – some of whom are ill due to psychological disorders and some who are not – who are linked only by the bogus disease category of "CFS', that's fine too. (Although you wont really be helping any patient group.)

BUT you cannot do this and ALSO claim to be an advocate for people with authentic neurological Myalgic Encephalomyelitis (the same illness that caused the Lake Tahoe outbreak). These two things are MUTUALLY EXCLUSIVE!

(You also cannot do this and include research into authentic M.E. patients into the ‘CFS’ mix! You cannot act as if the facts of M.E. were in any way relevant to various miscellaneous fatigue sufferers etc.)

M.E. and CFS are NOT THE SAME. Groups and individuals must stop claiming to advocate for M.E. sufferers or both groups and using terms like CFS, ME/CFS, CFS/ME and so on, when in reality the information they produce is not relevant and specific to M.E. at all. (These terms must also not be used by M.E. advocates. M.E. is NOT a subgroup of 'CFS,’ nor do patients with post viral fatigue syndromes caused by Q fever, glandular fever/mono etc. have M.E. M.E. is an entirely different illness than PVFS.)

People with M.E. also need to stop supporting ANY of these groups and individuals which continue to mix M.E. and CFS together and to act as if they were one and the same. We have to demand more of them NOW! This has to happen if we are ever to get anywhere... if we are to STOP the needless abuse and neglect so many M.E. sufferers live with every day...if we are to stop the needless deaths of M.E. sufferers...

The distinction must be made between M.E. and CFS. The distinction must also be made between terminology and definitions. It really isn't that complicated!

How 'fair' is all this abuse of very ill and vulnerable children and adults?

For more information see:

http://www.ahummingbirdsguide.com/misdiagnosis.htm
http://www.ahummingbirdsguide.com/testingforme.htm
http://www.ahummingbirdsguide.com/fatigueschmatigue.htm
http://www.ahummingbirdsguide.com/cbtandget.htm

Jodi Bassett, June 2007

• An additional note on 'CFS': These comments about separating out M.E. and ‘CFS’ are made also for the benefit of everyone MISdiagnosed with CFS who does not have M.E. These patients all deserve a correct diagnosis finally too, and correct treatment – which is denied to so many people because of the creation of 'CFS' in the 1980s. This isn't about who is the sickest. The point is not that ME is more severe than 'CFS', but that there is no such disease as CFS! EVERY DIAGNOSIS OF CFS IS A MISDIAGNOSIS.
• An additional note on the CDC: The USA CDC is the actual reason CFS exists and why so many patients have undergone so much immense suffering and abuse, or died. Supporting the CDC.... is supporting our abusers and a sure way to ensure the abuse continues for people with M.E. and everyone with non-ME illnesses misdiagnosed as CFS. For more information see: http://www.ahummingbirdsguide.com/topicactivismthecdc.htm

Make no mistake, the CDC could end the 'confusion' between M.E. and CFS if they chose to, very easily, within just a few years. They could completely end the abuse and neglect they've caused for good. They are well aware of all the facts about M.E., this is NOT a mere ‘misunderstanding.’ The fact is that they are CHOOSING not to do this, they are CHOOSING to continue to abuse and neglect of people with M.E. (and all those people misdiagnosed with CFS) to further their own vested interests. (So asking them nicely to stop doing so is NEVER going to work.)

To come to any other conclusion you would have to be ignorant of *all* of the enormous body of evidence which supports this view (including ANY of the material released on 'CFS' by the CDC over the last 20 years), be naïve to the point of idiocy … or have some very compelling vested interests of your own. You would also have to not actually have authentic neurological Myalgic Encephalomyelitis.....

Preaching passivity will only ensure that the abuse continues for many more years, or forever. As a fellow advocate said to me recently, if you aren't mad at the CDC and untrusting of the CDC, you can't be aware of the facts.

In the words of Hillary Johnson (who I hope wont mind being quoted again by me), author of Osler's Web: 'Reeves should have been sent to jail in the mid-1990s. The CDC shouldn't even be involved in M.E.; 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.'

I think that says it all.

Read another (earlier) response to Cort's post/website by LK Woodruff

For more information on the CDC etc. see also:

• Hillary Johnson: 'Garbage in, Garbage out'
• Stephen Du Pre: Evidence for brain SPECT scan as diagnostic for Myalgic Encephalomyelitis
• Mary Schweitzer Ph.D.: Presentation to the Chronic Fatigue Syndrome Advisory Committee July 17, 2006 and How Many People Have CFS? 
• Commentary on Prevalence CFS in Georgia, Dr. Wm Reeves needs to be removed immediately from his position! START recognizing ME!!!! It's been on the books for decades! by LK Woodruff
• A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome (an extract), The Nightingale Definition of M.E and The Complexities of Diagnosis and other articles by Dr Byron Hyde M.D.

Many more articles are also available in the Articles sorted by Author and Activism Articles sections.

See also Smoke and Mirrors, The effects of CBT and GET on patients with Myalgic Encephalomyelitis and The CBT and GET database for more information on exactly how people with M.E. are affected by CBT and GET and links and excerpts to hundreds of research studies and articles which expose the lack of scientific legitimacy (and the hidden financial and political motivations) underlying the 'behavioural' paradigm of M.E. and the use of CBT and GET on M.E. patients.

More essential reading on M.E.: What is ME? What is CFS? Information for Clinicians & Lawyers by Eileen Marshall, Margaret Williams & Professor Malcolm Hooper, The Mental Health Movement: Persecution of Patients? by Professor Malcolm Hooper,  Research into ME 1988 - 1998 Too much PHILOSOPHY and too little BASIC SCIENCE! and The Late Effects Of M.E. and A Rose by Any Other Name and Redefinitions of ME - a 20th Century Phenomenon by Dr Elizabeth Dowsett, Illustrations of Clinical Observations and International Research Findings from 1955 to 2005 that demonstrate the organic aetiology of Myalgic Encephalomyelitis (174 pages) by Eileen Marshall, Margaret Williams & Professor Malcolm Hooper, Worldwide Epidemic:an ALERT to citizens worldwide and; ME and CFS, the Definitions from the Committee for Justice and Recognition of M.E.