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

This is exactly the problem, I think - that so many in such a powerful group think the global change in professional attitudes toward ME is invisible and non-existent.

IOM reports are powerful instruments of change in medical practice across the globe. For the IOM, the NIH and the CDC to agree that the term CFS should be retired, and for them to say ME/CFS is not a psychological disorder - that is the change you have worked to achieve. It means you have convinced these formidable authorities that you were right all along, and the Wessely/Sharpe school was wrong.

That movement in the US has convinced Denmark and Sweden to take ME seriously as a disease, and it has convinced NICE that the UK guideline must be revised. It has convinced the NIHR to fund the largest ever study of ME as a disease, and it has convinced NICE to shift over to the term ME/CFS in advance of the new guideline. Every single one of these changes is a monumental win.

If all of the authorities in this wonderful movement want to call the disease ME/CFS and the Wessely/Sharpe thing CFS, why wouldn't you support that?

 

I wouldn't support it because Wessely and Sharpe were and are wrong. I wouldn't support their ideas in any way. It should be acknowledged that they were wrong and their ideas discounted at every turn. They and their ideas have done considerable damage to patients and I wouldn't award this with anything other than the acknowledgement that they were completely wrong.

 

I'm sorry i cant read the long posts. My worry is that all the names mean so many different things to different people. CFS in UK means something different to people from Incline Village in America, to folks at the CDC, to folks in Tapenui in NZ. In the UK for the last 15 years or so, most people with ME, if they have been diagnosed, were diagnosed with CFS not ME. If we start saying they are two different illnesses, rather than one illness (albeit hetrogenous) but that's had many different names, then we risk leaving people behind who have what we call ME, but what their paperwork calls cfs. I know quite a few people with the same illness that i have, but who just don't have the energy to be part of online communities or find out about the history. Most of them don't even know there is a controversy over the name and are quite happy to say they have cfs. But that doesn't mean they have a psychiatric condition, i know them, they don't. I hope that makes sense, finding it hard to find the right words... Kx

 

Willow, the movement completely agrees with you. That is the point of it. The movement says Wessely and Sharpe were wrong and have done considerable damage. It says people with ME are suffering from a serious disease that needs a cure. There are now major medical organizations across the globe who agree with this!

When these organizations explain why ME is a disease and not a psych problem they have to have a name for each of the different approaches. The name they use for the damaging Wessely/Sharpe thing is CFS (because that's the term Wessely and Sharpe use). The name they use for the disease is ME or ME/CFS, because that's the term researchers use. This is exactly what you have hoped for.

 

Well said, Kirsten. Sums it up well. Thank you.

 

You have said in your initial BMJ Rapid Response:

Would you answer these questions, please?


1 If the term, "Chronic fatigue syndrome" (indexed in ICD-10 to G93.3) were to be repurposed for a disorder you describe as "a psychiatric condition that sometimes develops in reaction to acute viral infection" that is "essentially deconditioning that arises from inactivity when patients embrace faulty illness beliefs" how do you envisage a repurposed "Chronic fatigue syndrome" would be coded for in NHS England data sets, which includes IAPT data sets?

Note: The version of ICD-10 currently mandated for use across NHS England is ICD-10 Version: 2016: https://icd.who.int/browse10/2016/en#/

You would not be able to suggest F48.0 Fatigue syndrome because there is an exclusion under F48.0 Fatigue syndrome for postviral fatigue syndrome (G93.3), to which Chronic fatigue syndrome is indexed.

You would not be able to suggest R53 Malaise and fatigue because there is an exclusion under R53 Malaise and fatigue for postviral fatigue syndrome (G93.3), to which Chronic fatigue syndrome is indexed.


2 You have said, "Coding will catch up."

In which chapter of ICD-11* and under which Parent block would you envisage that 8E49 Chronic fatigue syndrome should be reclassified to reflect your proposal that the term, "Chronic fatigue syndrome" is "a psychiatric condition that sometimes develops in reaction to acute viral infection" that is "essentially deconditioning that arises from inactivity when patients embrace faulty illness beliefs".

You would not be able to suggest 6C20 Bodily distress disorder because there is an exclusion under 6C20 Bodily distress disorder for 8E49 Chronic fatigue syndrome.

You would not be able to suggest MG22 Fatigue because there is an exclusion under MG22 Fatigue for 8E49 Chronic fatigue syndrome.

*WHO statement, February 07, 2020
"The ICD-11 codes are now frozen. Proposed changes to the classification that would result in a code change are not permitted..."


3 Several posters in this thread have highlighted their concerns regarding the plight of patients, including children, in the UK and in other member states who have a diagnosis of "Chronic fatigue syndrome" in their medical records, medical insurers records, social services, care packages, benefits agencies, schools, universities, work places etc.

Would you please respond to their concerns? How do you envisage safeguarding the interests of these patients, which include children, within the framework of your proposal?

 

Yes, very articulate and clear. And I completely agree. Tons of patients are getting the CFS diagnosis still, and most don't have the energy to keep up with the debate. That works just fine. I'm definitely not saying these people have a psych problem. Geez no. My work is all about making sure CFS patients are recognized as disease patients.

I'm saying there are a whole lot of medical organizations who are now fighting to get medical care for patients with CFS and ME/CFS diagnosis. All of them think the term CFS should not be used anymore because it's the term Wessely and Sharpe use in psychiatry. That sounds great to me. Wouldn't it be great if everyone stopped using the term CFS? If all the patients were recognized to be suffering from disease, and that disease was not tied to Wessely/Sharpe research?

That's what's happening. I'm saying that's a change worth supporting.

 

1. I am not proposing that any terms get "repurposed". Not going to say that again. I'm just reporting on usage among the med professionals who now demand recognition of ME/CFS as a disease. In philosophy we call this "descriptive rather than prescriptive".

2. I have no contributions to make on coding. When researchers make progress on understanding a disease, nobody in the profession stops and says "Wait! If we see this disease in a new way, the coding won't work anymore!" That would be backwards. There is monumental progress in understanding of the disease ME/CFS. With all the folks making that progress, the term ME/CFS is used for the disease, while CFS is used for the Wessely/Sharpe psych construct that should be rejected forever. It works really well to use the terms that way.

3. The great progress we're seeing in professional understanding of ME creates no "plight" for patients. The purpose of the movement is to safeguard the interests of of the patients, and it's working. None of the folks in that movement are saying patients dx with CFS have a psych problem. They're saying stop using the CFS label from now on. They're saying take all the patients dx with CFS and change their dx to to ME/CFS, so you can unequivocally recognize that they suffer from a disease. I'm just reporting that this change is happening, and I'm saying it's a good thing. It is a good thing.

 

That is not the original understanding of CFS and appears in none of its definitions. The above statement is a perverted concept of CFS developed by bPS psychiatrists/psychologists. They made it up. It is not a valid theory, but they sold it as such. The so-called "definitive" PACE trial, among others, showed that their treatment protocols based on the above theory do not work. But they sold it as such. And they became "CFS experts" dominating the field. Their theory does not reflect the reality of people with ME or CFS, but they discount what patients have to say about their own disease. I believe their work is based on research misconduct bordering on fraud and should be totally discounted, not given a Code in any form of medical indexing.

 

Well, I think the problem is if someone were to assume that there has been a global change in professional attitude - please could you tell me how many patients you have spoken to who have been treated differently by the medical profession due to the IOM report?

It is A change that collectively we have all tried to play a part in but you seem to think that it has had a more substantial effect around the world then us patients actually experience.

And I think it was the outcry from the patient community and charities in the UK when the original announcement from NICE was that it wasn't to be revised. If the IOM report had the effect that you claim NICE would have gone straight to reviewing it.

I assume that you mean DecodeME, the study funded by the MRC and NIHR? If so then, nope, that would be down to the long years of advocacy work that took place behind the scenes here in the UK. It wouldn't have happened without those patient, charity, and supporter efforts.

And the evidence for this is? Has it been confirmed somewhere that it was the IOM report that was the sole reason for this change? Personally, I doubt it.

Because, as has been explained to you, it's not that simple.

So in your question you assume that one answer is appropriate for the two parts of your question - it isn't.

Do I support the use of ME/CFS? On balance, yes, because we don't have a better name for it and because it's as inclusive as possible of all the patients who will have been labelled with either ME, CFS, ME/CFS or CFS/ME - so long as they have PEM I'll work to improve their lot, never mind what label someone has stuck on them.

Do I support the use of CFS for "the Wessely/Sharpe thing"? No, because of the existing numbers of ME patients who have been diagnosed with CFS - you haven't explained how that issue has been addressed globally by the IOM report. And how do you suggest I reconcile the fact that CFS is still in ME/CFS? If CFS is solely a psychiatric condition now, as you claim it is, then why should I be happy that it still make up part of the allegedly global name of my condition? Wessely/Sharpe et al deserve nothing from me, even including the ridiculous name CFS. The change that you claim for CFS just hasn't happened.

 

My diagnosis from the Charite in Berlin is:

Diagnoses: Chronic Fatigue Syndrome (CFS) (G93.3)

That's the best you'll get in Germany. A diagnosis of ME is simply not an option. It's not something the health service offers.

 

Indeed, for the German ICD-10-GM (developed, maintained and updated by DIMDI) it is Chronisches Müdigkeitssyndrom [Chronic fatigue syndrome] that is the G93.3 Concept Title:

https://www.dimdi.de/static/de/klas...m/kode-suche/htmlgm2020/block-g90-g99.htm#G93

G93.3 Chronisches Müdigkeitssyndrom [Chronic fatigue syndrome]

Chronisches Müdigkeitssyndrom bei Immundysfunktion
Myalgische Enzephalomyelitis
Postvirales Müdigkeitssyndrom​

 

I appreciate all the discussion, though I can't possibly answer all these small points. Maybe it's helpful for me to say that I understand why there would be so much mistrust of change in the medical community. At the same time, there's a forest for the trees problem here. Yes it's true that the movement toward recognizing the disease of ME/CFS is only slowly improving patient care. And it's true that a great many patients around the world are still diagnosed with CFS.

Still, it remains true that there is now a strong professional movement on your side. That movement will achieve your goals more quickly if you support it.

One last point: like it or not, the actions of ME patients at this time will have an impact on management of long Covid. It would be a generous gift for the ME community to stand against use of the term CFS for long Covid. I think you have the power to help protect others from some of the harms you've endured.

 

As far as I know ME is not diagnosed in Scotland.
It's CFS. Increasingly with FND

 

Why not?

If you publish a proposal on the BMJ Rapid Responses calling for the term, Chronic fatigue syndrome to be handed over to liaison psychiatry, when the term is currently classified in ICD-10 and SNOMED CT to the G93.3 code, when that code is specified as an Exclusion under F48.0 Fatigue syndrome and F53 Malaise and fatigue and when I and others have spent the last 6 years advocating for and obtaining specified Exclusions for CFS under ICD-11's Bodily distress disorder, you should be prepared to be accountable and prepared to answer questions about how your proposed new framework would function within the NHS and beyond.

 

Well, I'm terribly sorry that my attempt to address the detail of your argument resulted in "small points" that you can't possibly answer. Let me use more of my energy to turn it into larger points for you - your argument is wrong, based on incorrect, albeit well-meaning, assumptions that you have made. Additionally, your refusal to accept the lived experience of patients as the actual reality of the situation comes across as highly dismissive, and is unfortunately similar to treatment we have received previously from other parties.

Because you have just turned it into a psychiatric diagnosis.

 

Physicians and researcher worldwide have agreed to use ME/CFS, I think for the following reasons:

1. Neither term is very good and patients prefer ME.
2. ME is not used on its own to avoid two misinterpretations.
3. We want to avoid people thinking we mean ME in Wessely's sense that 'ME is just thinking you have ME'.
4. We want to avoid an implication that we are talking about an encephalomyelitis, as conceived by Ramsay, that no currently practicing physician has ever seen.

I would add to that that increasingly I see a further interpretation needs avoiding - the 'multi-systemic neuroimmune disorder' invented by the US physician/research community. We do not have evidence for this either and it invites confusion with things like herpes encephalitis and spinal cord compression. If the US community are pushing for just ME alone that would worry me on these grounds.

What we need in medicine is a scientific approach, by which I simply mean sensible and critical analysis of reliable data. What we do not want is to hang on the words of a committee from one isolated country. That is the eminence-based approach that gave us CFS in the first pace.