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

While CFS is a condition we can hope to resolve with holistic virus recovery strategies,ME/CFS is a chronic disease in its own right, one that requires its own treatments and research that will help develop them. In this sense ME/CFS is similar to autoimmune disease triggered by acute infection. Neither will be addressed through virus recovery strategies.

It must be quite difficult to write a paragraph like this that gets things so wrong. Autoimmune disease is not triggered by infection. Why should anyone think we can hope to do anything with holistic recovery strategies? Everyone agrees that CFS is not a condition, at least not this one....

It is as if there are some 'other people' with CFS who deserve to be mismanaged by psychiatrists because its really all their fault.

Fortunately anyone likely to wield any influence will realise it is not representative of anything or anybody much.

 

https://www.dianeoleary.com

(...)

(3)
I often write and speak about safe, ethical management of undiagnosed symptoms. Much of this work is focused on contested conditions like ME/CFS (“chronic fatigue syndrome”), fibromyalgia, Ehlers-Danlos syndrome, and chronic Lyme disease. I don’t have the scientific expertise to make determinations about disease in any patient group, but we don’t actually need expertise of that kind to see that medicine should maintain its usual standards for caution as it approaches the mind-body line. This principle is becoming increasingly important in health policy, and I’m proud to have played a role in that change...

 

@Diane O'Leary I have read your arguments and I'm afraid I remain unconvinced. I don't have the energy to respond to every small point, just a few:

There is already a distinct name for the BPS approach - completely abusive bollocks. It should not be dignified with any other name, no matter how many names they invent for themselves or try to steal or how many acronyms they come up with in their multiple rebranding exercises.

I beg your pardon? We are in constant contact with those who work on our behalf. Many are members of this forum or read it regularly. We are those who work on our behalf. We hardly need you to introduce us to ourselves or people with whom we are in constant contact.

That simply isn't true. Carmen Schiebenbogen calls my illness CFS. Lots of researchers do. Where did you get this from? How can you purport to speak on behalf of those who work on our behalf? We know these people, what are you talking about?

You are not fielding resistance, you are failing to make your case. Don't mean to be picky, but terminology is important (as I'm sure you would agree).

Why? I've been fucking furious for six years, and I don't care who knows it. Surely you're not suggesting meekness, appeasement and gratitude is going to get us anywhere? Where have you been for the last 30 years?

Are you speaking on behalf of clinicians now? As well as on behalf of those who work on our behalf? As well as on behalf of ME sufferers? Can you stop speaking on people's behalf please?

Yes I'm rather busy myself and must be off.

 

Good for you, Sam, good for you. How bloody DARE Dr O’Leary tell us how we should feel about the abuse and deaths and destroyed lives caused to ME/CFS sufferers by the medical establishment, along with the implication that we should be GRATEFUL for her intervention despite being completely tone deaf to the lived experiences of people who know intimately exactly how dispiriting, infuriating, humiliating and desperate it is to live with his illness and the stigma that accompanies it. Imagine telling Black Lives Matter protesters to stop being angry about the racism people of colour endure their entire lives, or telling LBGTQ people that the homophobia they experience shouldn’t make them angry. Or maybe on a level Dr O’Leary should be able to appreciate as a woman, how angry it would make her to have the level of sexism and misogyny women live with every day dismissed and be told to effectively “sit down and shut up because you’re making the men uncomfortable”. It’s not good enough, and the fact that she doesn’t seem able to appreciate our concerns is very worrying indeed. This kind of advocacy we can well do without, frankly.

(Edited to correct my misspelling of Dr O’Leary’s name, apologies.)

 

I'm just a patient, sick since 1990, who is sharing some thoughts. I hope this makes some kind of sense.

I think that first statement is wrong. I don't think that most researchers who work on this illness [ME/CFS/SEID/PVFS?/etc] use CFS as "the term for the psych alternative."

But even if I agreed that we could somehow improve life for ME patients by just changing the term CFS to mean "a psychiatric condition that sometimes develops in reaction to acute viral infection" I still would not throw CFS patients under the bus just to help myself. That would be cruel!

That said, I'm probably one of the patients who would get thrown under the bus.

I live in the USA. When I filed for disability benefits with the SSA [Social Security Association], back in the year 2000, my illness was coded as Chronic Fatigue Syndrome. (I've linked to an SSA webpage which now includes the term ME - but that term was not used on the SSA website 20 years ago when I applied for disability benefits).

For what it's worth, I meet several other diagnostic criteria for ME, not just the Fukuda CFS criteria. I don't think that would help me much.

Folks in the USA who have a CFS diagnosis, and who are also on disability benefits, have a hard enough time as it is. We have to provide loads of evidence just to qualify for disability benefits. We have to be seen by one of the SSA doctors. These SSA doctors often manage to get valid claims denied. Even if we make it through the gauntlet of forms/tests/etc, every time our disability claim comes up for review (every 3-5 years for an average CFS patient) we have to provide more evidence, maybe go back for more doctor appointments, more medical evidence, or get another letter from the doctor, and so on.

The SSA is underfunded. There is a backlog of cases to be approved and reviewed. To top it all off, the president of the USA keeps talking about tax cuts that would bankrupt the SSA funds.

The idea that doctors and insurance companies would suddenly change terminology and start using CFS as "the term for the psych alternative" is absolutely terrifying!

Folks in the USA with a CFS diagnosis in their medical files, as well as in their SSA files, would have to fight both their own doctors and the SSA bureaucracy to change their diagnostic name to ME. And then fight with their insurance companies (we don't have national health care) on top of that.

Disease coding is important, yes, but ignore coding for a minute. I'm just talking about the name CFS being associated with a psychiatric diagnosis for every single patient who has that label in their files. I can't even IMAGINE how much work it would take to get that label out of their files and changed to ME! I think many patients would simply give up.

But even if this idea hurt no one, even if someone could snap their fingers and magically make all those bureaucratic changes happen -- everyone's CFS diagnosis is changed to ME (or ME/CFS), no one loses their disability benefits, everyone continues to get insurance coverage for their doctor appointments and prescriptions -- I would STILL not agree with this idea.

I could not in good conscience support the idea that the term CFS refers to a psychiatric diagnosis.

Patients with a Chronic Fatigue Syndrome diagnosis, or a Chronic Fatigue (CF) diagnosis, or even an ME diagnosis, might not have ME (or CFS or SEID). People get diagnosed incorrectly all the time. There are a lot of unknowns.

But I do not think there is a group of psychiatric patients with a diagnosis of CFS that is "essentially deconditioning that arises from inactivity when patients embrace faulty illness beliefs." I have not seen any proof for this.

[final edit to fix a couple of typos]

 

I was diagnosed with CFS/PVFS in 1992 for my Federal disability benefits by an ME doctor who was one of the authors of the 2003 Canadian Consensus Criteria for ME. I was approved immediately. The diagnosis of CFS still remains on my medical file today.

 

@ahimsa puts it well. Social Security disability (and SSI) are a mess in this country and Social Security Disability is difficult to get. (Pre-pandemic it was typically 22 months before a hearing.)

Private long-term disability coverage in the US is usually only an employer provided benefit. (As with many US employer provided benefits availability of benefits of any sort varies widely.) Long-term disability"psych" benefits typically only last 2 years so a CFS diagnosis for psych reasons would mean a (usually) significant reduction in benefits.

 

@Mij - I am so glad you were approved so easily! In addition to having an ME specialist do you have thoughts on what helped your case?

 

Possibly because my ME doctor characterized my history as relapsing-remitting and permanent?

I was also approved for the Disability Tax Credit which has a very restrictive criteria and difficult to obtain.

 

Sorry, Dr. O'Leary, I just don't buy your explanation or your statement that there is nothing in your BMJ letter that implies the Sharpe/Wessely construct is credible. I think the opposite is true. You present a case for it. You even want to give it legitimacy by naming it -- CFS. A proposition that is insulting to us who have carried that diagnosis for decades. You even say it can be "resolved with holistic virus recovery strategies," whatever the hell that is. You specify that:

The term “chronic fatigue syndrome” names a psychiatric condition that sometimes develops in reaction to acute viral infection.[2] [3] [4] It is essentially deconditioning that arises from inactivity when patients embrace faulty illness beliefs. You do not refute that statement in any way in your article.

That whole concept is nonsense. It doesn't exist. Oh, there are false illness beliefs all right, but not those of patients, rather of the BPS psyches who invented and promoted it. You say we have to give an alternative to allow for this. I ask "why?" That makes no sense to me whatsoever It should not be given any legitimacy. It is nonsense. That is what should have been made clear in your article.

 

Thank you @TiredSam @Blueskytoo @ahimsa @Mij @Denise @Trish and @Willow for your posts, overnight.

I hope Dr O'Leary will read these and have a long, hard think about how she has presented herself throughout this thread.

In 2014, I posted the following notice on my Dx Revision Watch site:

https://dxrevisionwatch.com/2014/01/01/clarification-coalition-for-diagnostic-rights-website/

Clarification: Coalition for Diagnostic Rights

A website called Coalition for Diagnostic Rights has recently been launched.

The site includes references to Suzy Chapman and to Dx Revision Watch.

Suzy Chapman/Dx Revision Watch is not associated with or affiliated to the Coalition for Diagnostic Rights website or with any registered or unregistered organization associated with that site, and has no responsibility for content published on that site, or published in the name of that site on other platforms.

Suzy Chapman
Dx Revision Watch​

--------------------------

It was important to me that I was not inadvertently thought to be associated with that site. In the interests of transparency, during its early development, I had been invited to become involved with Dr O'Leary's Coalition for Diagnostic Rights "movement". For a number of reasons, I declined that invitation.

As a carer of an adult with ME, I am a stakeholder in ME advocacy and have been an advocate myself for over 18 years.

Dr O'Leary does not represent me; she does not represent my adult son. I struggle to see just who she does represent, since I see little evidence of willingness to actually communicate with those whose interests she claims to represent or to learn from them, and little evidence of her being receptive to, and respectful of the historical and political nuances around ME in the UK, the US and elsewhere.

There is no place for autocracy in patient advocacy...

https://twitter.com/user/status/1299696296434032642


https://twitter.com/user/status/1299399777155780608


https://twitter.com/user/status/1299189599282044935

 

@ahimsa Your experience, in the US, of the disability benefits system and the toll it can take on patients' health and their mental health mirrors the experiences of many patients in the UK when the "dreaded brown envelope" drops through the letterbox.

Spoiler: Trigger warning

We've had young women in the UK drag themselves off to a graveyard in the middle of the night and hang themselves from a tree because they cannot face going through yet another denial of disability benefits or cannot face another appeals tribunal.

But Dr O'Leary presumes to tell patients who live with this shit year after year that they should get behind "the movement" and accuses forum members of "resistance" when they point out the very obvious flaws in her arguments and that by not supporting her proposal (because that is all it is - it has no basis in reality), we are holding back our own community.

 

The odd thing is that it seems that Dr O'Leary is saying the ME is CFS.

For her, CFS is defined as a false belief that you are ill (maybe with ME) when you reconditioned.
But this in itself is a false belief by psychiatrists.

So CFS is a false belief by a psychiatrist that a patient has a false belief that they have ME. Two negatives make a positive so these people do have ME. The patient was right.

Unless of course Dr O'Leary is really agreeing with the psychiatrists. And it looked very much as if some of the US experts agreed with the psychiatrists when they recommended stopping GET on the grounds that PACE had recruited the wrong patients and it is only people with real psychiatric fatigue (CFS?) who benefit from GET.

What a muddle.

 

If Dr O'Leary wants to give liaison psychiatry, CFS/ME clinics and GPs a term they can apply (and code) to patients with what she defines as:

in order to differentiate "CFS" from the real deal "ME/CFS" cohort, there are already terms within ICD-10's Chapter V which they could use:

There is F48.0 Fatigue syndrome (which conveniently comes with an exclusion for the G93.3 code and has a handy note for coders to this effect, in NHS Digital's National Clinical Coding Standards ICD-10 5th Edition handbook):




There are selected of the various F45.x Somatoform disorders block they can use.

In Chapter XVIII Symptoms, signs etc, there is

R53 Malaise and fatigue and its inclusion, Chronic malaise and fatigue (which again conveniently has an exclusion for the G93.3 code).

Why does she never mention these terms?

Why throw existing CFS coded patients under the bus by re-purposing "Chronic fatigue syndrome" (which the WHO in any case has indexed to the G93.3 code since 1994 and which the WHO will continue to code under PVFS, BME for ICD-11)?


But the bigger question is - why has she bought into this "...a psychiatric condition that sometimes develops in reaction to acute viral infection.[2] [3] [4] It is essentially deconditioning that arises from inactivity when patients embrace faulty illness beliefs."

bullshit in the first place? And in whose interests is it to perpetuate this concept?

And does she really believe that under her proposed framework, English, Scottish and Welsh GPs and CFS/ME clinical services (and GPs and services in other countries) are going to trawl through patient records and change "CFS" (coded G93.3) to "ME/CFS" (also coded G93.3) on her say so - that a "momentous movement" is sweeping the globe?

How does she propose, in the future, that GPs will determine, and with what tools, which new patients are "CFS" and which are the real deal "ME/CFS" patients (when they will continue to be coded under the same code anyway for NHS England data purposes and local NHS Trust statistical use); and how does she propose the WHO will disaggregate the "CFS" patients from the real deal "ME/CFS" patients for statistical analysis over time when they are all still being assigned the same code?

But Dr O'Leary seemingly prefers to disregard all that has been set out for her around the importance of coding within the NHS and for the WHO - so I very much doubt we'd get any answers out of her, anyway.

 

Let's just think a little more about the practicality of Dr. O'Leary's proposed CFS construct. It seems like she is presenting this in an effort to help Long-Covid patients from being short-shifted by the medical community as CFS, ME, ME/CFS, CFS/ME patients have been for decades. What would prevent skeptical clinicians (and there are MANY of them) from simply sending Long-Covid patients down her proposed new CFS construct into the path of psychiatry? It seems to me her proposal would facilitate this. On what basis would clinicians decide whether their patients are psyche cases or biomedical cases? The Wesseley/Sharpe thing has been so thoroughly promoted and adopted that I think the far better approach would be to thoroughly discredit their ideas rather than capsulize them into a new construct of CFS. This is the path that CFS or ME/CFS patients have taken in trying to help advise the ever-growing population of Long-Covid patients. The proposed Dr. O'Leary construct does just the opposite.

 

I agree.

I was quite pleased to see that an employee (possibly a coder) in a London NHS Trust hospital has submitted a request to SNOMED CT for addition of new Concept codes for Post COVID-19 symptoms or for a Post COVID-19 syndrome (or similar term, subject to consultation with clinical bodies).

Clinical bodies and post COVID-19 patient groups need to own this.

https://isd.hscic.gov.uk/rsp-snomed/user/guest/request/view.jsf?request_id=32731

Request No: 32731

--------------------------------------------------

Edited to add:

An additional request has been submitted via the NHS Digital Submission Portal for creation of a Concept(s) term for

"Post-Covid syndrome"

https://isd.hscic.gov.uk/rsp-snomed/user/guest/request/view.jsf?request_id=32886

Request 32886; Submission date: 11/09/20

 

In the context of people who may have ME/CFS following SARS-CoV-2 infection infection, what I want is for clinicians to carefully distinguish, not between terms or explanatory models, but between effective and ineffective treatments, regardless of what they think causes my or anyone else’s illness.

For me, the priority is to get the message out to health professionals dealing with people with long Covid to stop prescribing exercise with such gusto, because in ME/CFS or whatever they want to call it, increasing activity generally and exercise specifically, has proven ineffective at best and harmful at worst, and a subset of those with long Covid sound like they may have ME/CFS.

Exercise is recommended for all kinds of “biomedical dx” (Diane O’ Leary’s term). There’s nothing about encouraging clinicians to consider ME/CFS as biomedical that stops them recommending exercise for it.

Unconscious people in ICU are exercised, for example, with passive cycling using electric cycle ergometers.

Exercise is also recommended for all kinds of “psych dx” (Diane O’ Leary’s term).

It’s recommended for everything.

@Diane O'Leary You use the term “virus recovery strategies” – I’ve never come across this term before. Here it is in your first rapid response:

Do exercise and CBT come under this term? Do you believe that if researchers and clinicians switch to the term ME/CFS for that subgroup of patients with long Covid to whom it may apply, that they will stop recommending exercise for it? If so, I would disagree, for the reasons already given above.

I don’t think a terminological distinction can be described as “crisp and simple” (Dr O’ Leary’s 2nd rapid response) when one term quite literally contains the other, but the constructs they describe are supposedly completely separate and should supposedly lead clinicians to entirely different treatment/management recommendations.

In my view the biggest potential driver of change at the moment is that health professionals themselves are experiencing something akin to ME/CFS following SARS-CoV-2 infection, or are seeing so much of it in their patients with such a demonstrable trigger, and are rearranging their constructs and, in some cases, views on effective treatments, as a result.

 

Exactly. And it would be appropriate for Dr O'Leary to respond to this point and to also explain what she means by:

and also how she defines:

Even the WHO and SNOMED International have yet to agree upon a consistent terminology and definitions for post COVID-19 symptoms and syndromes.

It might be inferred that Dr O'Leary envisages two distinct forms of chronic post COVID-19 symptoms/LongCovid: a "psychogenic form" that she proposes should be called "CFS" and another form that she proposes requires different management strategies.

But surely the defining of chronic post COVID-19 presentations (which will include a range of symptoms and signs, according to sequelae in various body systems, in addition, in some cases, to chronic fatigue and post exertional symptoms) and the development of terminology for the diagnosing, coding and statistical reporting of these presentations is a matter for clinical bodies, the WHO classification team in collaboration with WHO-FIC Collaborating Centres, the ICD-11 MSAC and CSAC committees, SNOMED International and the post COVID patient community?

 

Dr. O'Leary getting to the psychiatrist's, psychologist's, or therapist's office requires physical exertion. After arrival, there is the visit it's self. CBT is emotionally and mentally exhausting. I found no matter how much I said “may I be well” I only worsened. My mind can not think away CFS. I was causing myself lots of Post-Exertional Malaise which was a worsening of my CFS. I was declining. My therapist realized I was exhausted and nearing hospitalization. The solution was to stop and rest. I never returned to my previous baseline.

It is humbling to reveal my embarrassment of trying CBT as a treatment for CFS before such an esteemed forum. You see Dr. O'Leary, I wanted to be healthy so badly. I wanted my life back. I wanted my freedom back. The disease is a prison. Even with well-meaning intentions, I made a mistake. It was a mistake to try CBT. Saying “may I be well” doesn't cure disease. There is no mind-body connection when it comes to diseases. If there was we wouldn't see disease in humans. A diabetic's mind can not overcome diabetes. A diabetic can not say, “may I be well” and their pancreas magically begins working. I learned this lesson the hard way, by trial and error.

General Practitioners and Primary Care Physicians who are wise in the treatment of CFS reach for the prescription pad and write antidepressants for depression. Why? They are trying to save the patient from psychotherapy post-exertional malaise. By recommending psychiatrists for CFS you have opened a door for General Practitioners and Primary Care Physicians who are unwise in CFS to send long COVID patients into a post-exertional malaise nightmare. These patients will be harmed. Some will become severe CFS patients. As others have explained CFS is a name often used by Primary Care Physicians and General Practitioners, my doctor still uses CFS.

If it is within your power you should retract your statements about CFS. Or at least denounce your previous statements about CFS. It would take great humility to do so, but you would be saving long COVID patients from harm. You asked MECFS patients to try and protect long COVID patients shouldn't you do the same? Shouldn't you practice what you preach? Running away and going back to work isn't a solution. Long COVID patients need your help. Please don't let them down.

(I apologize to the forum for all my spelling, grammar, and punctuation mistakes.)