Advances in ME/CFS: Past, Present and Future; Friedman, 2018-19

[MeSci]

Source: Frontiers in Pediatrics

Preprint

Date: March 19, 2019

URL: https://www.frontiersin.org/articles/10.3389/fped.2019.00131/abstract

Advances in ME/CFS: Past, Present and Future
--------------------------------------------
Kenneth J. Friedman1

- Kenneth J. Friedman, Medical School, Rutgers, The State University of New Jersey, Newark, United States, Email: kenneth.j.friedman@gmail.com

Received: 15 Dec 2018

Accepted: 19 Mar 2019

Abstract

The forerunner of what is today termed myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) was described by the CDC in 1934. At the present time, we still do not know its cause and or how to detect it by routine clinical laboratory tests. In consequence the pathological nature of ME/CFS has been overlooked and the disease has been stigmatized by being mislabeled as psychosomatic or somatoform illness.

Such misperceptions of the disease have led to sub-standard research exploration of the disease and minimal to absent patient care. A 2015 Institute of Medicine report on the illness declared ME/CFS a disease affecting up to 2.5 million Americans and chastised the U.S. government for doing little to research the disease and to support its patients.

Clinicians who currently treat this disease declare it to be more devastating than HIV/AIDS. A comparison of the histories of the two diseases, an examination of the current status of the two diseases, and a listing of the accomplishments that would be needed for ME/CFS to achieve the same level of treatment and care as currently experienced by patients with HIV/AIDS is provided.

Keywords: ME/CFS, HIV/AIDS; infectious diseases, History, comparison, Patient care activity

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(c) 2019 tiers Media S.A.

 

[Andy]

Sci Hub - https://sci-hub.se/https://www.frontiersin.org/articles/10.3389/fped.2019.00131/abstract

 

[Roy S]

Page 12 of 22

There are no domestic care, treatment,prevention, or housing programs for ME/CFS

patients. For ME/CFS, a disease estimated

to have more than double the number of patients, and with a quality of life judged to be

as or more diminished than that of HIV/AIDS, the disparity in patient care and patient

benefits is unsettling.

AIDS patients were identified in 1981 and the virus causing AIDS was identified in 1984

(Gallo and Montagnier, 2003). NIH expenditure for AIDS research for the period of

1981-1984 was $132,881,000 (calculated from Table 4.2, Institute of Medicine, 1991).

Knowing that AIDS is caused by a single virus, whereas multiple viruses and other

triggers precipitate ME/CFS, the research expenditure likely needed to determine the

etiology of ME/CFS will be equal to or greater than the research expenditure required to

determine the causal agent of AIDS. The federal government and the patient community

need to be aware of the probable cost of identifying the causal agent or agents of

ME/CFS.

The accomplishments for and by the HIV/AIDS Community, while attributed to

HIV/AIDS “activism,” (Act Up, 2018) make it clear that the U.S. government could have


done and still can do much more for ME/CFS. The accomplishments for and by the

HIV/AIDS Community may suggest goals for the ME/CFS Community. A lack of parity

of research and benefits is logically and ethically difficult to justify.

With the non-renewal of the Chronic Fatigue Syndrome Advisory Committee charter by

the U.S. Secretary of Health (HHS.gov, 2018), there is no formal venue in which the

inequalities of ME/CFS research and treatment of ME/CFS patients can be addressed.

But, knowing what has not worked for the ME/CFS Community in the past, and knowing

what has worked for others who have suffered similar disparities in disease-specific

healthcare and medical research, may prove helpful to the severely underserved ME/CFS

Community.

 

[Tom Kindlon]

 

[WillowJ]

That's a link to free full text:
https://www.frontiersin.org/articles/10.3389/fped.2019.00131/full

For people who use cross-site tracking blockers and don't always follow the links to a new page.

 

[rvallee]

I can only skim because it is so dense with information, but it's excellent. Really captures the historical failure and gives it proper context.

I think part of the unease is that the failures in dealing with this disease are so widespread, so systemic in nature that the problem cannot be fixed with small measures. It's daunting to accept and such a risk to bring forward a problem that requires a whole-system change, especially as this goes against the current whole-system change completely in the wrong direction with all the woo and psychobabble turning its back on modern medicine and demanding that Freud be made lord emperor and decider-of-everything. It's boom time and this product won't sell itself!

 

[Forbin]

In 1955, McEvedy and Beard (3) labeled a cluster outbreak of the illness as “mass hysteria,” and the New York Times cheekily renamed the illness, “Yuppie Flu,” mischaracterizing the illness as exclusively affecting young and upcoming professionals (26).

Not to be picky, but McEvedy and Beard's paper was published in 1970, though it was about the Royal Free outbreak in 1955. Likewise, the earliest example of the term "Yuppie" being invoked in relation to the illness that I'm aware of comes from a 1986 article in New York Magazine (not the New York Times), which described the illness as being called the "Yuppie Plague" because it was striking youthful and materially prosperous members of the Hollywood community. The term "yuppie" was popularized in the early 1980's, after having apparently originated in this 1980 article in Chicago Magazine.

 

[rvallee]

because it was striking youthful and materially prosperous members of the Hollywood community

Weird how it was that but also simultaneously a "bored housewives' disease". It both struck down young successful people and older unsuccessful people but not both of those groups, somehow. Those facts are both true but not together in some weird superposition of reality. Also: no children, except for those who have it (but it's clearly their parents' fault for being both traumatizing and too protective).

It strikes successful people who are too perfectionist, but all the same it strikes people who are aimless in life and dissatisfied with the pace of modern life (nevermind that modern life is way easier and less stressful). Also it's mainly caused by trauma but it doesn't matter if you didn't have any, it's still a valid "explanation" of the unexplained, somehow.

Fitting for a disease where your opinion can both be dismissed as invalid if negative but the gospel, irrefutable, truth if positive about "recovery", which means whatever you want it to mean but definitely not the common meaning of the word.

The overall theme of the handling of this disease is shocking, abysmal, incompetence, with only few tiny pockets of sanity.

 

[Michelle]

There are no domestic care, treatment,prevention, or housing programs for ME/CFS

patients.

While I'm only 46 so still have a few more years before I have to think about this (knock on wood), I worry about what is going to happen when I still have this disease in my 70s or 80s and need some sort of institutional care. I already require home care service a couple of times a week (could use more but Medicaid will only pay for so much) and the only reason I've started thinking about this issue is that two years ago my health was deteriorating to the point I was starting to worry I might require an assisted living situation. But I'm so sensitive to light, noise, smells, movement, etc. that a nursing home would be, literally, torture. Obviously I'm not alone in this and as a community we really need to think about housing for ME/CFS patients, whether because of aging or just severe debility. Traditional nursing facilities are simply not equipped to deal with ME/CFS patients without causing them tremendous suffering. Perhaps this is the wrong thread for this. But this quote really stuck out for me as it is something I think about a great deal but am unsure what to do about.

 

[Trish]

I can only skim because it is so dense with information, but it's excellent. Really captures the historical failure and gives it proper context.

I agree it's excellent. There was some of the US history I didn't know and the comparison with the funding of, and treatment of patients with, HIV/AIDS is stark.
It was written as the introductory article to a special issue of Frontiers in Paediatrics. There have been quite a few articles published over the last few months, so I guess they will all be gathered together into a single collection.

 

[Forbin]

FWIW, here is a link to the 1986 "New York Magazine" article which may have been the first appearance in print of the word "yuppie" in connection with ME/CFS. The article was called "The Hollywood Blahs," and it says "It's been called the Yuppie Plague, but those who have it aren't laughing." Given the time frame, the article mostly talks about Epstein-Barr.

https://books.google.com/books?id=t-cCAAAAMBAJ&pg=PA40&lpg=PA40&dq#v=onepage&q&f=false

 

[chrisb]

It is interesting to see that article in the New York Magazine. It makes it clear that the author was merely reporting the term which was already in use, and that he was not the source of it.

It is of interest also to see the claim that susceptibility is inherited made with such confidence at that stage.

 

[ME/CFS Skeptic]

Quite a remarkable paper for a peer-reviewed scientific journal. I think this will be useful for ME advocates as it explains some of the issues without window-dressing.

Here are some interesting quotes:

[ME/CFS] has been stigmatized by being mislabeled as psychosomatic or somatoform illness. Such misperceptions of the disease have led to insufficient research exploration of the disease and minimal to absent patient care.

Mischaracterization of ME/CFS has led to inappropriate and, for some, harmful treatment options (28). Characterization of ME/CFS as a psychosomatic illness has led to the belief that cognitive behavioral therapy (CBT) and graded exercise therapy (GET) are therapeutic if not curative.

When a child has ME/CFS, the parent or parents may be accused of Munchausen’s Syndrome By Proxy (MSBP). In some cases, these children have been removed from the home leading to increased severity of illness.

Some of the professional scientists who have pursued ME/CFS have jeopardized their careers and livelihood (31). Medical school clinicians have been told to stop seeing ME/CFS patients because they require too much of a clinician’s time, and, if they do not stop, they will need to work elsewhere. Researchers have been told that ME/CFS research will not be considered for their promotions, and if they are not promoted, they willneed to leave the institution. Medical educators have been told that ME/CFS educational activities are not, “professional,”

"When I was a medical student in the ‘90s, we were instructed that CFS patients could not be seen in our clinic,” Montoya recalls. “And a letter was sent out to those patients telling them not to come"

There is not one FDA-approved drug for the treatment of ME/CFS. [...] Currently, there is not one, federally sponsored or supported ME/CFS clinic in the United States.