The use of the labels ME, CFS, ME/CFS

And, just for the record, Straus wasn’t CDC Director. He was a researcher at NIH.

 

@EzzieD - good find. That's a revealing letter.

I understand fatigue and pain are the top problems people see doctors for. Stands to reason, but this might be wrong.

Including "fatigue" in the CFS term blurs the boundaries of this disease, and makes it just run of the mill for physicians.

The name CFS trivialize this disease, and likely signals it is temporary.

 

No argument from me - it was a terrible choice of a name.

 

Ah, thanks for the correction!

 

I just found a copy of the full letter! https://d3n8a8pro7vhmx.cloudfront.n...85814547/Strauss-Fukuda_Letter.pdf?1585814547

Further to the excerpt in the tweet I posted on the previous page, this is also telling:

Wow. And again, it's 'my own sense' - no scientific proof involved (or needed, I guess).

 

This letter has been going around for a long time. It’s evidence of what a dreadful person and a poor scientist Straus is, so it’s part of the historical record, but he’s been dead since 2007. He did this community a lot of harm and was a significant source of the stigma that we still experience, but my hope is that we can move forward from the bad old days of Straus.

We could use a significant effort to fight stigma, both inside and outside of our federal agencies, but, in my opinion, good research will do more than anything else to counter the stigma. There is no one working on ME/CFS at NIH who would agree with Straus’ foolish opinions about this disease anymore. We just need them to act with urgency to understand this horrible disease. And please stop believing old misleading rumors about dangerous patients!

As an aside, I met Fukuda also. He was a much better scientist and human being than Straus. His definition was a step forward in the US at the time, but of course it is obsolete now.

I probably shouldn’t say this, but it was obvious when I met Fukuda that he had heard the usual garbage about us being deranged lunatics. He looked at me with great discomfort initially. (We were both speaking at GA State University here in Atlanta.) After a few minutes, he seemed to realize that I was sane but sick, and we had a very good panel and discussion afterwards. His presentation was more solidly scientific than most at the time (back in the ‘90s).

 

Oh absolutely. I brought up the letter as a historical illustration of how a disabling multi-system physiological illness got turned into 'idiopathic fatigue'. However, Strauss is gone but the idea that ME/CFS = merely fatigue still prevails. I indeed hope things move forward but it rankles that I remember decent research being done into ME back in the 1980s (T-cells, brain blood flow, etc) which simply vanished when the psychs were allowed to take over. Many younger people nowadays don't even know that there was biomedical research into it going on back then. We potentially could have had it all sorted out years ago, but now we have to wait for the wheel to be reinvented all over again.

 

There's a great thread on twitter related to this. It's little wonder the research on ME/CFS is getting nowhere when doctors and specialists are so clueless:

https://twitter.com/user/status/1383345164056358919


https://twitter.com/user/status/1383350060256092164


ETA: early on in the illness, I also told a specialist that I felt like I was poisoned or severely hungover. He basically laughed at me. You soon learn which symptoms you can talk about and which ones you cannot mention to doctors.

 

If someone said CFS is not cancer, would they be doing a disservice to CFS patients?

 

So much is down to poor communication. The doctor asked how it feels like, symptoms are very hard to put into words and this is a close comparison, analogies have to be used. The doctor refuses the explanation because the patient is obviously not poisoned. But that's not what was said. And because of how it went down the whole discussion is derailed and turned hostile, which will make the doctor even more oppositional, basically nullifying the entire effort for both parties. Everyone is pissed off, but for completely different reasons.

What an incredible mess, that so much technical failure is a direct result of the patient saying one thing and the physicians hearing... whatever it is they expect to hear. And if it doesn't fit expectations, in a matter of seconds the whole discussion is closed off entirely because what is expected carries more weight than what is actually happening.

There is genuinely no analogue for such failure in any other field of expertise, nothing that even comes close to how basic those failures are, right down to simple words or explaining something poorly, even if it's a consequence of the illness itself. It would be like if it were normal for car mechanics to refuse to do their job unless the client drives to the shop, with a firm policy of no towing. The absurdity is off the scale.

 

This post has been copied and following posts copied or moved from the NICE guideline publication thread here

Diane O'Leary is still at it:

https://twitter.com/user/status/1454477761465159684



Meanwhile, NCHS has proposals for returning Chronic fatigue syndrome to the ICD-10-CM G93.3 location under proposed new sub-code: G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome, with the three proposed inclusion terms, as below, plus SEID indexed to the same G93.32 code:

G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome
Chronic fatigue syndrome
ME/CFS
Myalgic encephalomyelitis


Index term: Systemic exertion intolerance disease [SEID] G93.32
​

proposals about which she is silent.

 

her tweet & insistance in separating the too is really not helpful. as usual

 

She appears to believe that NICE's decision to switch the 2007 guideline title "Chronic fatigue syndrome/myalgic encephalomyelitis" to "Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome" for the 2021 guideline some how magics away the term, "Chronic fatigue syndrome", which, according to her, has now become a term exclusively the domain of psychs and for those patients who may benefit from psych treatments.

She has listened to nothing she was told on this forum.

 

The fact that the WHO continues to code both terms to 8E49 for ICD-11, is in her view, immaterial. As is SNOMED CT having CFS as the lead term and cross mapped to ICD-10's G93.3.

I find it interesting that for someone based in the US she never involves herself in US coding proposals. If the proposals of NCHS are approved, both terms will be coded to a new sub-code G93.32, under a proposed new conjoined code title:

G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome.

Does she still wish to hand over already coded with CFS patients to the US psychs - as these are the folk she says may benefit from GET/CBT and psych therapies?

 

Why is she seemingly incapable of grasping that in the UK, under NHS England's mandated coding and terminology systems, it makes no difference whether you are diagnosed with Myalgic encephalomyelitis/chronic fatigue syndrome, or with myalgic encephalomyelitis, or with chronic fatigue syndrome - you will end up being assigned the same SNOMED CT or ICD-10 code.

Just repeating over and over that post NICE publication, "CFS" is now the domain of the psychs does not make it true.

 

What is bizarre is that even if ‘idiopathic chronic fatigue’ exists as an objective and meaningfully diagnosable entity, why tie it to the label CFS which has such a history of confusion and conflict, and which is firmly linked to ME/CFS in so many minds and in current diagnostic codes. Further, even though we can not say it will not be helped by GET/CBT, there is no evidence out there that supports this hypothesis so far.

Indeed if idiopathic chronic fatigue does exist we know even less about its aetiology than we do about that if ME/CFS.

[clarified wording]

 

I do wonder whether some of her hubris stems from having been misdiagnosed some years ago with CFS before being diagnosed with Sneddon's syndrome (all public domain and media reported information). Now she seems to think that reversing the order of CFS/ME to ME/CFS has erased the CFS term, leaving it freed up to be handed on a plate to the psychs - never mind all those Brits who still have and will likely continue to have "CFS" recorded as their diagnosis in their medical and medical insurance records. (Same applies to US px, too.)

 

Sorry to go off topic, but the nonsense she spouts about NICE having "dropped CFS" makes my blood boil.

 

I don't understand her motivation for going on about this?