(CDC) Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), 2023

I totally agree the diagnostic process for chronic fatigue must consider conditions that could be causing it. But I'm not clear why only ME/CFS would continue to be subsumed inside the chronic fatigue pathway while MS and those other conditions would have their own pathways.

 

As its main symptom is PEM, ME should be classed under exercise or exertion intolerance.

The researchers hired by the CDC concluded there isn't even enough evidence to write guidelines. In an ideal world, this would feed into research funding decisions at the NIH.

 

No clinical guideline invites and seems to condone dismissal, and neglect. Which is what we've experienced for decades.

 

I agree with @Trish. Stuffing ME into a bucket of medically unexplained chronic fatigue is going to end up harming people with ME for the reasons she notes. Unlikely to get the care they need and too likely to be harmed

One nuance here - CDC does provide quite a bit of "guidance" on the care of people with ME. And the Clinician Coalition also does in their Mayo article. But if I understood correctly in a US CFSAC call when this review was first discussed, CDC distinguishes between "guidance" and "guidelines" where guidelines are based on RCTs. I don't know if that difference in terminology is common.

 

With careful history taking, PEM can be diagnosed quite easily for doctors who have had specialist training in ME but to fulfill criteria for ME/CFS, the fatigue must have been severe in that you are unable to do a combination of normal activities eg, work, socialise, exercise, activities of daily living etc for 6 months and other medical diagnoses excluded. It is sort of like tailoring the questions, as often the patient has multiple symptoms and may lack understanding but once clinician has a handle on pre-morbid function, in all spheres, they can sort out the PEM threshold, sort of…Can be tricky when gradual onset but not impossible.

 

Yup, doing this excludes A LOT of people. I didn't have the level of ME fatigue until many years, and yet it was clearly the same illness overall, it was different but continuous. I couldn't have possibly tracked the number of times people said in LC forums during the first year how they don't really have fatigue, they feel sick but not "tired". They got the same reaction I did the first time I heard about CFS: I looked into the description, and immediately dismissed it as it was way too far from my experience.

And besides PEM in response to exertion, there is the baseline sickness feeling that is always there for many of us. I don't need to exert to feel like death, I always do. It sure makes it worse, but I have never felt anything other than sick for years. Not fatigued, that's a terrible description, sick. Maybe this is simply because of baseline exertion, but putting too much emphasis on that has lead nowhere, medical professionals think of exercise, high exertion, and don't bother past that, they don't have the time anyway.

The fatigue pathway is a dead-end, it will never lead anywhere. First there are too many related conditions. IBS ain't fatigue, neither is dysautonomia, neither is chronic pain, neither are neurological symptoms. Putting everything around fatigue will always be a complete bust. There has to be a comprehensive model of chronic illness, one that is politically difficult because of medical traditions, at least for now.

I have never recognized myself in any description that emphasized fatigue. It's wrong, incomplete, like saying a car is basically wheels: you got the steering wheel and the actual wheels, don't need to add any more detail to that, you've just described a car from a "wheel" perspective. It basically misses almost all of it, including the parts that make a car an automobile.

I don't see a lot of it yet, but what Long Covid showed us is that ME is one outcome, and that outcome rarely occurs alone. We are basically stuck with old invalid descriptions clustered around the siloes of medicine when what's needed is to simply start over from scratch, without all the damn baggage. The whole thing was set crooked because of the combination of ignorance and the extreme incompetence of biopsychosocial ideology.

 

In my case, which was initially nothing worse than having a few bad days per month, a good clinician would have been able to recognize a pattern of patient attempting to maintain normal levels of activity, succeeding for days/weeks, but inevitably having a crash after some time, no matter how motivated they were, and needing a day or a few to reset. And then starting it all over again. And also this problem worsening over time. I see no reason why PEM couldn't have been diagnosed even very early on. Also the first time I heard about CFS being suggested as possible diagnosis, I didn't believe I had it because it was depicted as people lying in bed *all the time* from severe fatigue, while mine was not as severe, and the resting in bed thing was more sporadic.

It's this pattern that seems characteristic to me. Even in the mildest form there is already a meaningful problem, but little chance for it to be recognized or diagnosed as such.

 

I don't think it is that easy. People with tuberculosis with a cough, rather than spinal deformity do not get a separate diagnostic category necessarily. The difference has important implications for treatment but that is a different issue.

I didn't put it like that, that was Dr Souhami's question. There are other and better ways to raise the issue. But the key issue is whether or not the presence of PEM generates a clinically useful subcategory. Everyone here thinks it does but from a medical point of view it is unclear. If we don't really know how to treat anyone within a broader category that includes unexplained fatigue then it is difficult to prove usefulness. Maybe people without PEM should be advised to rest and pace too - we don't know, do we?

 

Precisely, we don't know.

I am not denying that I agree that ME deserves a separate category. I do. But for the CDC to argue that the weakness of trials relate to patient selection when in fact it relates to the poor methodology of assessment, lays it open to anyone in the medical profession to question the evidence for insisting on certain classification. It is just that it is an irrelevance.

When it comes to pain it is perfectly acceptable to recruit people with different reasons for pain. It is the norm. Because most of the treatments act on generic pain pathways. There may well be treatments that act of generic pathways relevant both to ME and unexplained fatigue without PEM.

 

I am afraid that I really don't think there is. We have some 2 day CPET studies that remain pretty hard to interpret in terms of relevance to PEM and mechanisms. I don't know of anything else substantiated. Various findings get published but rarely get reproduced and none have been tied together into a story that would be considered established.

ME has symptoms across multiple systems but I have always thought the term 'multi-systemic disease' is misleading and unhelpful at the present stage of knowledge.

 

Abso1ute1y this! The assumption that ME is something on the extreme end of a 'chronic fatigue spectrum' is the root cause of so many of our prob1ems with medicine and hea1thcare's approach to us. Rea1 harm and even death have been the consequence.

As an aside, I fee1 the same with regard to autism (being seen as something on the tai1 end of a spectrum of 'autistic traits' that everyone has, but that's another can of worms). However, if they actua11y 1istened to patients these category errors wou1d be much more obvious.

 

But for decades the medica1 profession has been advising peop1e with PEM to specifica11y not rest and pace (that is in response to their symptoms), and exercise/activity is sti11 promoted as being not just harm1ess, but as good for a11 chronic i11nesses.

For PWME our doctors are sti11 treating us as if we have no under1ying patho1ogy and our symptoms are the resu1t of deconditioning (as the primary cause of our i11ness - of course I recognise that deconditioning does occur as a secondary issue, but it is so distressing when this prevents us getting appropriate care not just for the ME, but other comorbid conditions).

 

Ditto!

I have tried with severa1 GPs to get my ME symptoms recorded on my medica1 notes (basica11y a proper c1inica1 history) without success due to the attitude of they have towards ME (which they insist on ca11ing chronic fatigue syndrome, or just 'chronic fatigue').

Because of the prob1ems this has caused over the 1ast coup1e of years, I now have a number of specific examp1es that have resu1ted in inappropriate care for me (with regard to chronic infections and my severe asthma) so I am fina11y going to take this up in writing with my GP, so she can understand why what I'd been requesting was so important to both my care and preventing medica1 harm.

 

the rhetoric suggesting ‘impossible to blind’ and inferring that’s the only demand/thing missing by critics and is utterly impossible to the point of being a stitch up to mention has been Sharpe’s fave one line retort

so seeing that gives me the shivers that someone has got into someone somewhere a ear and the nonsense is feeding down etc

 

Indeed on that last bit with a line addded to confirm that ‘other therapies’ haven’t had decades and probably thousands of attempts at it

 

I must be missing what’s happened because it’s all a bit weird to go from where they were in 2017.

then there was definitely a sense of ‘this is the one paradigm/theory that we threw all our weight and funding behind and had all patients following as an edict - and has now been confirmed to not work’. I don't think I was reading into it to note a sense of '.....so obviously we need to take lessons learned from the harm caused by it and where it went wrong to go forward in a different and better direction'.

I can’t help but think one of those things that changed since then is covid and long covid and whether that’s a reason we get collateral damaged and what can be done is overshadowed by politics for that

These things need to underline the 'avenue extremely well explored with nothing to show for it, vs others just beginning but showing more potential and robustness'