What do you think of the IOM's new name for ME/CFS? VOTE!

[Gijs]

Many of us also have food- alcohol- heat- CBT- GET- and doctor intolerance!

 

[Dolphin]

Regarding other languages, I have heard people say that Chronic Fatigue Syndrome doesn't translate well into some languages.
They complained there was no fancy word like "fatigue" in their language and instead there was just a word like tired/tiredness so one gets chronic tired/tiredness syndrome which they thought was worse again than chronic fatigue syndrome.

 

[Valentijn]

My favorite way to say SEID would be "Systemic E.I.D." It sounds like something serious at least! Maybe because the use of "Systemic" mirrors the name of lupus somewhat.

 

[MeSci]

There has been an organised campaign since the 1980s by the Wessely school to "educate" doctors and the public that ME is a fake condition.

Just had a quick look through the ME Research UK database of ME/CFS abstracts, and almost every one I've seen so far by Wessely has called it CFS. A couple have called it ME/CFS or CFS/ME in the text, but I think all the titles said chronic fatigue syndrome. It's over 1700 pages long and I got to about page 600, by which point I had found a lot by him - must have been a dozen or so.

 

[MeSci]

My favorite way to say SEID would be "Systemic E.I.D." It sounds like something serious at least! Maybe because the use of "Systemic" mirrors the name of lupus somewhat.

As long as it doesn't get confused with the Muslim festival of Eid!

 

[MeSci]

Another one spelt out is HIV.

Has everyone seen this poll on pronunciation?

I've also just seen this piece in yesterday's Physicians' First Watch:

New Name and Diagnostic Criteria Proposed for Chronic Fatigue Syndrome
By Kelly Young
Edited by
- David G. Fairchild, MD, MPH, and
- Lorenzo Di Francesco, MD, FACP, FHM

The Institute of Medicine has proposed a new name and diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome. The committee recommends that the disorder be renamed systemic exertion intolerance disease (SEID) since the existing term "does not serve ME/CFS patients well."

To be diagnosed with SEID, patients must have:

-- impaired day-to-day function;
-- malaise following physical, cognitive, or emotional exertion;
-- unrefreshing sleep;
-- plus either orthostatic intolerance or cognitive impairment.

Symptoms must be present for 6 months. At least half the time, symptom intensity must be moderate to severe.

Patients whose symptoms haven't persisted for 6 months should still have their symptoms treated, even if they don't yet meet the diagnostic criteria, IOM officials said Tuesday.

In the Annals of Internal Medicine, a commentator writes: "A new name by itself will not improve the lives of people with systemic exertion intolerance disease. Improved knowledge and acceptance among clinicians, in addition to an enhanced research agenda, will go far to bridge the gap between current practice and helping persons with this condition."

Link(s):
Institute of Medicine report brief (Free PDF) http://click.jwatch.org/cts/click?q=227%3B68139289%3BgkshHW%2FhmDqA4vgQyL8mVDAvXo44LmO%2FiC70f0joGnU%3D~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf
Annals of Internal Medicine commentary (Subscription required) http://click.jwatch.org/cts/click?q=227;68139289;gkshHW/hmDqA4vgQyL8mVIia+tI4QvT3iC70f0joGnU=
Background: NEJM Journal Watch Pediatrics and Adolescent Medicine summary on an internet intervention for teens with ME/CFS (Your NEJM Journal Watch registration required) http://click.jwatch.org/cts/click?q=227;68139289;gkshHW/hmDqA4vgQyL8mVNx0vPLbdO9FiC70f0joGnU=

 

[Sidereal]

Just had a quick look through the ME Research UK database of ME/CFS abstracts, and almost every one I've seen so far by Wessely has called it CFS. A couple have called it ME/CFS or CFS/ME in the text, but I think all the titles said chronic fatigue syndrome. It's over 1700 pages long and I got to about page 600, by which point I had found a lot by him - must have been a dozen or so.

Precisely. There has been a concerted effort to wipe out the term ME from medical texts as @charles shepherd often points out and Wessely has been instrumental there. In the late 1980s and early 1990s, Wessely wrote a number of papers about chronic fatigue syndrome and if he referred to ME at all it was in scare quotes as in "myalgic encephalomyelitis", accompanied by sarcastic commentary that this is just some crazy fake inaccurate name patients use to make their condition sound more serious than it is. Abstracts will do you no good, you'd need to read the papers.

This effort to wipe out ME culminated in the Royal Colleges report in 1996 which was vile on every level but this report specifically demanded that the condition be referred to as CFS and not ME. It was only through pressure from patients and charities that CFS/ME and ME/CFS were invented much later on as a compromise.

At the same time, there has been an unrelenting media campaign smearing ME patients since the 1980s and this was orchestrated by psychiatry and insurance companies.

 

[MeSci]

I wouldn't have thought that all - maybe most - types of exertion intolerance caused systemic damage like blood volume depletion, immune changes, insomnia/neurological changes, effects on cognition, effects on heart rate, generalised weakness, swollen and tender lymph nodes, effects on gut function, etc., as many/most of us experience with PEM.

...not to mention the findings from 2-day CPET, e.g. discussed here.

 

[Min]

The name myalgic encephalomyelitis is perfectly adequate, we just need to drop the wretched 'CFS'.

 

[Dolphin]

I'm not sure if it has been mentioned but one we should be familiar with that is spelled out is M.E. It's not "me".

 

[Nielk]

Why is it that they had no problem with Myalgic Encephalomyeilitis when it was a hybrid with Chronic Fatigue Syndrome ME/CFS? Yet, they have an issue with it when it stands alone?

More and more comments are appearing in news media that this is just laziness.
I just watched a video of a newscast about the IOMnew criteria and they show people getting up in the morning and yawning- needing a cup of coffee with a commentator saying do they have the new disease SEID?

What we have to take into account is how the new name will be perceived by outsiders.

So far, it is not pretty!

 

[Dolphin]

Why is it that they had no problem with Myalgic Encephalomyeilitis when it was a hybrid with Chronic Fatigue Syndrome ME/CFS? Yet, they have an issue with it when it stands alone?

Myalgic Encephalomyelitis is rarely used on its own in the published literature. It's ME/CFS or CFS/ME. Few studies have been done in the last twenty or so years on M.E. criteria.

 

[jeff_w]

What we have to take into account is how the new name will be perceived by outsiders.

So far, it is not pretty!

Exactly.

Also, the vast majority of doctors will not read the IOM report. All they will hear is the new name. And the name "SEID" does nothing to take away the stigma and perception of "laziness." Having "neuroimmune" in the name would have been much better.

 

[Aurator]

It strikes me that if one tenth of the thought that has collectively gone into this impressive thread had been expended on renaming the disease, they'd have come up with a much better name for it.
But, as always with this disease, people other than the patients seem to know better.

 

[Sean]

But, as always with this disease, people other than the patients seem to know better.

Yes, they did rather take some of the gloss off it all by not consulting with patients about the new name. However I don't this situation is irretrievable.

 

[Kati]

The problem here in Canada is when we mention ME, physicians very quickly understand that it is chronic fatigue syndrome and therefore deemed unimportant or a waste of their time. Many people from this community believes that Canada uses the ME terminology, I assure you it is not so.

I worry that whatever name it will be called it will always (at least for a while until there are major breakthrough or major education campaigns) revert to 'chronic fatigue' or 'chronic fatigue syndrome'. While I am not entirely sure SEID is the perfect name, at least it's a good start in a new direction.

The worst thing that could happen to us would be HHS turning their heads on the report.

Edit to add: change is never comfortable.

 

[Snow Leopard]

Quote from an earlier thread:

"Dr. Derek Enlander suggested that we could re-name the illness ‘Ramsay’s disease’ in the grand tradition of calling diseases after the people who first documented them."

WHO discourages the use of eponyms:

http://www.who.int/classifications/icd/revision/Content_Model_Reference_Guide.January_2011.pdf

Who cares what the WHO says. "Discouraged".

Ramsay's disease is pretty much the only name that we can get every patient to agree with. Doubly so for the translation issues as pointed out by others and this can be used as an additional justification.


We need to organise better, invite thousands of patients worldwide in a patient-centred discussion on renaming this illness. Participants can initially suggest names and then finally rank their preferences. I'd predict the two most popular responses would be ME and Ramsay's disease.

We need to tell them that they cannot continue to choose stigmatising sounding names, that we have the right to participate in the naming process.

 

[Dolphin]

A lot of people have talked about consulting patients.

But I think there is little chance it would have led to agreement:

Some people only want myalgic encephalomyelitis as the name.

And some people don’t want myalgic encephalomyelitis as the name.

(and many of the people who want myalgic encephalomyelitis won’t have myalgic encephalopathy).

I don’t think having a consultation would magically solve this impasse.

(ETA: This wasn't written in reply to Snow Leopard's message which popped up when I posted).

 

[Snow Leopard]

How would we know unless we ask?

 

[Dolphin]

A lot of people have talked about consulting patients.

But I think there is little chance it would have led to agreement:

Some people only want myalgic encephalomyelitis as the name.

And some people don’t want myalgic encephalomyelitis as the name.

(and many of the people who want myalgic encephalomyelitis won’t have myalgic encephalopathy).

I don’t think having a consultation would magically solve this impasse.

(ETA: This was written in reply to Snow Leopard's message which popped up when I posted).

(Replying to my own post)
That's not to say a poll wouldn't be useful. I think it would find that there won't be agreement.

(ETA: Another post of mine that was posted just after Snow Leopard posted)