"Interest groups" and ME/CFS

[urbantravels]

This is otherwise a pretty interesting article. But I'm befuddled by the passage highlighted below.

I honestly can't tell whether this is meant to say that "interest groups" made up a disease entity where none really existed, or whether "interest groups" successfully fought for recognition of a disease in the face of those who denied its existence. And what 'interest groups' are meant - patient advocacy groups?

http://www.nejm.org/doi/full/10.1056/NEJMp1113569
The Burden of Disease and the Changing Task of Medicine
David S. Jones, M.D., Ph.D., Scott H. Podolsky, M.D., and Jeremy A. Greene, M.D., Ph.D.
N Engl J Med 2012; 366:2333-2338 June 21, 2012
[Second graf under "Accounting for the Burden of Disease" heading]

By examining the many new diseases that have appeared over the past two centuries, historians have categorized the ways in which diseases emerge. New causes (e.g., severe acute respiratory syndrome, motor vehicle accidents, radiation poisoning), new behaviors (cigarette smoking, intravenous drug use), and even the consequences of new therapies (insulin transforming the course and manifestations of diabetes) can produce new diseases. Changing environmental and social conditions can increase the prevalence of once-obscure ailments (myocardial infarction, lung cancer, kuru, and “mad cow” disease). New diagnostic technologies and therapeutic capacity can unmask previously unrecognized conditions (hypertension). New diagnostic criteria can expand a disease's boundaries (hypercholesterolemia, depression). Changing social mores can redefine what is or is not a disease (homosexuality, alcoholism, masturbation). New diseases can emerge as the result of conscious advocacy by interested parties (chronic fatigue syndrome, sick building syndrome). HIV–AIDS alone demonstrates many of these modes of emergence. The emergence, recognition, and impact of disease are never just a bioscientific process; the advent of a new disease always involves social, economic, and political processes that shape its epidemiology and influence our understanding and response.

The other mentions of "CFS" in the paper refer to the battles over disease definition in a fairly neutral-seeming way...I think.?

Disease definitions structure the practice of health care, its reimbursement systems, and our debates about health policies and priorities. These political and economic stakes explain the fierce debates that erupt over the definition of such conditions as chronic fatigue syndrome and Gulf War syndrome.

Well, yeah.

As contemporary disputes over the definitions of alcoholism, chronic fatigue syndrome, and attention-deficit disorder make clear, physicians are never the sole arbiters of disease.

And God forbid they should.

 

[xchocoholic]

"New diseases can emerge as the result of conscious advocacy by interested parties ... "

His logic doesn't make any sense to me. But I think he's saying exactly what he wrote. He thinks special interest
groups advocated that our disease be separated from other disease processes and be called cfs. Or me whatever.

For me, it's not clear if "interested parties" means he thinks that medical professionals or patients caused the disease
Cfs to emerge.

From my perspective, 20 years post diagnosis, my doctors gave me this diagnosis. I had accute onset and was too sick
to care what it was called.

Fwiw, I'm trying to unravel what's behind my me/cfs symptoms. So I'm on the fence still as to whether or
not cfs should've been used as my diagnosis. Dysautonomia, celiac, ataxia, lbb, myoclonus, hyperinsulinemia, petite mals, etc .. YES. These are all objective findings.

Cfs ? I have oi, chronic fatigue and pem so I still fit the cfs diagnosis but what's causing these ?

Tc .. X

 

[urbantravels]

It's a sweeping statement to make (and of course no citation is given for the claim.)

The author could have very easily said that it's not KNOWN which of these categories ME/CFS would fall into, because we DO NOT KNOW ENOUGH YET to answer that question. New causes, new behaviors, changing environmental conditions; it could be any one, or more than one, of the other causes he gives for diseases "emerging." And we don't know yet if it really is an "emerging" disease or if it's been around longer.

It's the confidence with which this vague statement about the supposed "reason" for the "emerging" nature of ME/CFS is tossed off that doesn't sit right with me. Once again, ladies and gentlemen of science: would it kill you to say you don't know? Or, worse yet, are you paying so little attention that you actually think ME/CFS was determined a "non-disease" years ago and that the question is settled?

 

[xchocoholic]

Good points.

I didn't like what he said either but I'm still trying to wrap my head around his whole chain of logic.
If I'm reading this correctly, he puts cfs into a group of "illnesses" that he doesn't think are real. And that these diseases are made up to appease
special interest groups.

So, if we use his logic, which special interest group decided that young kids who can't sit still in a classroom
should be drugged and not allowed to just be kids and go outside and play ? Ok, that was big pharma. Lol

I wonder if these authors have ever met anyone who actually had cfs. Or what they would've diagnosed
a cfs patient as having.

Tc .. X

 

[biophile]

I honestly can't tell whether this is meant to say that "interest groups" made up a disease entity where none really existed, or whether "interest groups" successfully fought for recognition of a disease in the face of those who denied its existence. And what 'interest groups' are meant - patient advocacy groups?

I suspect the meaning was somewhere inbetween, but more in line with the hypothesis that CFS is an arbitrary collection of real symptoms but not necessarily a distinct clinical entity, possibly even a so-called "culture-bound syndrome". It is probably just a passing comment, I doubt it was heavily researched, at least it is called a "disease", although perhaps that was short for clinical entity or what people think of as a disease? The author states "medicine struggles to keep up with the changing burden of disease", this comment reminded me that ME/CFS patients also struggle to keep up with wave after wave of changing biopsychosocial-babble.

 

[justinreilly]

This comes from the repetition by Simon Wessely that "CFS" is 'culture-bound', ie that it doesn't exist at all in countries in which 'special interest groups' (i.e. Us here: mentally unstable people trying to 'medicalize' mental problems, laziness and garden variety fatigue) have pollluted medicine with p.c. politics and insisted "CFS" is a disease, where it really is just somatization.

CDC really got this into the textbooks etc. with their repeated statements and physician 'education' that "CFS" is a "social construct" (ie a fake disease). This phrase was repeated in past editions of text-books such as Mass Generals' Physician Handbooks. This guy is probably like all the other ignorant doctors, who are somewhat at fault, but also somewhat excused because they (wrongly) trust CDC and their textbooks.

I think it is the textbook authors and officials of AMA and APA who are clearly breaching their duty to disseminate truthful information about diseases. After we have been raising this issue for decades, they have a clear responsibility to investigate our claims and question those of the criminals at CDC and the British Psychiatrists.

I have been focusing on the textbooks with almost no concrete results, but I think it is still worth pursuing (also lobbying the med orgs like AMA and APA). I hope others will join me. it's easy, just google "Justin Reilly Amazon" and chime in with a short, one-star review of a bad book.

 

[urbantravels]

BTW, I worked in textbook publishing for a number of years. Textbooks are chosen by the professor that is teaching the class: the people who actually buy the book have no choice in the matter. (In the industry this is called "cat food marketing" - you don't market cat food directly to cats.) So a protest at the point of purchase would not have any effect.

If you want to make a complaint about textbook contents it would be more effective to contact the publisher directly; find out who the developmental editor is and speak to that person. Sometimes the developmental editor works on a contract basis for specific books and is not actually a full-time employee. It would also be best to find out where in the publication cycle a specific textbook is: major texts are revised for new editions after a certain number of years have passed, and the only time to make a suggestion about content would be early in the development process for the next edition of the textbook.


***

As for the original link I posted, it is truly confusing because it could be read either way: that ME/CFS is a "socially constructed" disease, or that it is NOT, but that it "emerged" (i.e. became recognized as a disease) via pressure on the part of advocacy groups (which is mostly true).

The inclusion of "sick building syndrome" with ME/CFS as an "activist" driven emergence is troubling, because the larger consensus is that sick building syndrome as such doesn't really exist; there definitely are buildings with environmental issues that cause illness, but there is a diversity of these issues/illnesses and not just one "syndrome."

On the other hand the author goes straight from there to give the example of HIV/AIDS as "emerging" through a combination of factors. The actual emergence of HIV in humans has been dated back to the early 19th century; but the point at which it became noticeable how many people were falling ill was one point in the "emergence" process, and there was an evolution in how the disease was understood, from being called "gay cancer" and "grid" to a correct identification of the immune problems involved. Activists were extremely important in the process of drawing attention to the illness, correcting the spread of misinformation and paranoia about it, and accelerating the process of drug development, but I'm not clear how much they had to do with the initial identifying of the disease *as a disease*.

There were those, at the time, who attributed AIDS to the stress of dealing with the social stigma of being gay; but I think that idea got washed out pretty quickly as the scientific evidence about the real cause started to pile up

Anyhow, there are different kinds of 'emergence' where diseases are concerned, which is an important point to keep in mind; I just wish ME/CFS wasn't thrown in there as an "of course everybody knows" type of example - especially in a context in which there is a high level of controversy about the disease.

 

[biophile]

There were those, at the time, who attributed AIDS to the stress of dealing with the social stigma of being gay; but I think that idea got washed out pretty quickly as the scientific evidence about the real cause started to pile up. [...] I just wish ME/CFS wasn't thrown in there as an "of course everybody knows" type of example - especially in a context in which there is a high level of controversy about the disease.

That is a good clue for explaining what went wrong with public perception of ME/CFS. The scientific evidence for the real cause never arrived in time, so all the "everyone knows" psychobabble about stress and personality and hypochondria was allowed to calcify. Here we are still dealing with it 25 years later despite that these have already been gradually debunked as primary explanations. And regarding the confusion of the NEJM paper, sometimes ambiguity is intended!

 

[alex3619]

In the absence of good science babble abounds. I have been doing more reading on early neurasthenia, and it appears it was the male alternative to hysteria within twenty years of Beard defining it in 1869. Typically women got hysteria, men got neurasthenia. Neurasthenia by this time was so broadly defined that a huge range of illnesses were misdiagnosed as neurasthenia. Freud became convinced that it was caused by unsatisfactory sex lives, and condoms were in part to blame. If he were alive today, he would probably say the prevalence of condoms is leading to widespread psychological disorders.

I repeat again: in the absense of good science babble abounds.

Bye, Alex

 

[justinreilly]

Alex,

Yes, and the fact that neurasthenia was conceived as a disease of males just shows how ridiculous the whole thing is with Wessely et. al claiming neurasthenia is "CFS" while at the same time trying to paint it as being hysteria (which according to the psychiatrists affects mostly women).

 

[justinreilly]

urbantravels,

I agree that the fact that professors pick textbooks renders critique at the point of purchase much less effective. I still think it is worth doing though since some of those books such as Harrison's or very specialized texts are also bought by students and doctors by their own choice. It also puts the debate in a public forum where people using and writing the book can see it.

Thanks for the specific info on textbook publishing. I have saved it as it will come in handy. Wondering if you have any interest in working with me to contact publishers and editors?