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"Patients battle for justice" - opinion piece from Leonard Jason

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
This is pretty great (in my opinion), I recommend clicking through to read the rest:
http://blog.oup.com/2015/09/patients-battle-for-justice/


Patients battle for justice

Is it possible that a disease as impairing as Type II diabetes mellitus, congestive heart failure, Multiple Sclerosis, and end-stage renal disease could be repeatedly belittled and delegitimized by scientists and health care professionals? Tragically, this is the case for a devastating illness affecting over one million Americans, and these patients have been deprived of their basic rights to respect, appropriate diagnosis, and humane treatment.

In the beginning, patients with this illness had a credible name, Myalgic Encephalomyelitis (ME), and diagnostic criteria that had been developed by the distinguished British physician, Dr. Melvin Ramsay. Yet, in 1988, the Centers for Disease Control (CDC) renamed this illness chronic fatigue syndrome (CFS). Patients were unanimous in their disdain for this trivializing term, but they were no match for the supreme power and authority of the CDC. The new name placed patients around the world in a compromised position, as they were now forced to use a degrading and stigmatizing term in explaining their illness to family members, friends, work associates and medical personnel...


- See more at: http://blog.oup.com/2015/09/patients-battle-for-justice/#sthash.gzW5IT2a.dpuf
 

Effi

Senior Member
Messages
1,496
Location
Europe
Rarely in the annals of recorded medicine has there been such a David and Goliath-like battle, with impaired and sick patients trying to defeat an entrenched medical and scientific establishment. Their story of resistance is not one of an epic skirmish, but rather a veritable war with health care professionals and scientists that has endured for decades.
:ninja:
Ultimately, whatever decisions are made on the names and criteria, the vetting process needs to be open, inclusive and transparent, with patients playing a prominent, decisive, and leadership role in these deliberations.
:thumbsup:
 

halcyon

Senior Member
Messages
2,482
Strongly agree with his conclusion and suggestion to bring back Ramsay's work. Strongly disagree with his assertion that the 1988 CDC CFS criteria renamed ME to CFS. The term ME does not even appear in that paper.
 

Sidereal

Senior Member
Messages
4,856
Ramsay's ME case definition is still the gold standard to my mind because it captures the essence of this disease instead of just listing a bunch of subjective criteria like a Chinese takeout menu. I don't see why we need all these pointless American and international committees who keep trying - and failing miserably - to come up with a better one.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Strongly agree with his conclusion and suggestion to bring back Ramsay's work. Strongly disagree with his assertion that the 1988 CDC CFS criteria renamed ME to CFS. The term ME does not even appear in that paper.
But, in effect, ME was converted to CFS. I think that's the point he's making.
The CFS pages on the CDC website used to state that ME was a different condition. I can't find it today - the page may have been revised.
 

halcyon

Senior Member
Messages
2,482
The CFS pages on the CDC website used to state that ME was a different condition. I can't find it today - the page may have been revised.
It was on their old CME page. It said:
Various terms are incorrectly used interchangeably with CFS. CFS has an internationally accepted case definition that is used in research and clinical settings. The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that is not fully supported in the medical literature. The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.
 

Effi

Senior Member
Messages
1,496
Location
Europe
It is a little scary sometimes how right he got it, so early on, and just how much he has been ignored since by the medical establishment.
I went back to read the Ramsay case definition yesterday and what you're saying is exactly what I thought. It's spot on! I wonder what would've happened if they'd called it Ramsay's disease and focused all funds on researching the actual disease process, instead of making up new names and new definitions and getting totally derailed by the psychobabblers. Benefit of hindsight?
 

Snowdrop

Rebel without a biscuit
Messages
2,933
After explaining why she does not like the new name (SEID) she suggests calling this illness 'Ramsay's Disease'.
As I've been reading about the IoM report I've started thinking about the name.
I have always used ME. However, I find this name to be difficult for people to remember.
I am fully behind calling it Ramsay's Disease. When people hear Parkinson's, Alzheimer's, Huntington's etc they don't always know precisely what the symptoms are but they know they are real and serious illnesses.

When there is more and better research that would be the time to choose the scientific name for this illness along with subtype nomenclature. Until then I think saying I have Ramsay's or even Ramsay's/ME works for me.

From an old post in the IoM thread. I really do like the idea of calling this Ramsay's Disease. It solves so many problems. Fatigue clinics will have more difficulty making ridiculous treatment claims and confusing the public.
 

Sidereal

Senior Member
Messages
4,856
I am against all trivial-sounding descriptive names like CFS or SEID. Too open to psychobabble quackery.
 

Denise

Senior Member
Messages
1,095
The World Health Organization has a page on naming diseases.
Among other things it advises against the use of people's names when naming a disease.

Terms that should be avoided in disease names include geographic locations (e.g. Middle East Respiratory Syndrome, Spanish Flu, Rift Valley fever), people’s names (e.g. Creutzfeldt-Jakob disease, Chagas disease), species of animal or food (e.g. swine flu, bird flu, monkey pox), cultural, population, industry or occupational references (e.g. legionnaires), and terms that incite undue fear (e.g. unknown, fatal, epidemic)." http://www.who.int/mediacentre/news/notes/2015/naming-new-diseases/en/"
 

halcyon

Senior Member
Messages
2,482
As always we are perpetually tripping over the elephant in the room. What are we talking about, ME or CFS? I really don't see any rational reason for renaming ME to something else until there is convincing evidence that the name does not reflect the underlying etiology. Renaming ME accomplishes nothing.

CFS is of course a terrible name and I think everyone agrees that it should be changed, though if you read the 1988 CDC paper the name does perfectly reflect the framework they were trying to create. Clearly the CDC/NCHS and the IOM could not justify renaming CFS to ME, for good reason. The advocacy effort from a few years back to push CFS into G93 was bizarre. As the CDC points out, there is nothing neurological about the CFS case definition.

I'm still puzzled by what the IOM did. They said CFS and ME are distinct, so therefore CFS can't be ME. But somehow CFS and ME can both be SEID.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Naming the illness that eventually gets a biomarker for all the symptom's found in criteria like the international or Canadian ones as Ramsay's disease puts the whole business outside of the medical communities hands in terms of defining what it means. Our illness was defined quite accurately long ago. I don't need a name that tries to capture the functional aspect I'd really prefer to identify outside that whole arena.

It also stops immediately the clinics that sprout up with cures for chronic fatigue saying that ME is the same thing. They could try and say that now Ramsay's is the same but as it has not been used that way before they'll have a lot of work to sell that and it might just backfire as it would cause people to dig deeper at that point to find out what's what.

That's not particularly clearly stated sorry. Diseases in fact do go through name changes as the understanding develops--this is where I'd like to end up. Not that anybody with the power to change it will much care what I think.