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

[Hutan]

His question was what was the evidence for a specific ME category within chronic fatigue being clinically useful.

I can't imagine any justification to continue to lump ME into an undifferentiated mass of chronically fatiguing, medically unexplained conditions as done historically.

Asking the question about whether ME/CFS is a clinically useful category is, I think, reasonable.

When I worked with the Heath Pathways team to make clinical guidance for doctors, the pathway we made was for Chronic Fatigue, which included ME/CFS. The reason was that doctors are faced with people coming in with fatigue and associated symptoms and they have to try to work out what is going on. So, the diagnostic process needs to cover the wide range of possibilities - could it be poor nutrition or nutrient absorption, sleep apnoea, some metabolic disease, cancer, brain injury, MS, an infection, over-training, a problem with a medication....? If a particular disease other than ME/CFS is identified, then the clinical care is covered by the pathway for that other health condition.

Investigating whether PEM was occurring was covered in the pathway, along with identifying anything else that might be exacerbating symptoms, because that impacts on advice given. A person might not actually meet the criteria for ME/CFS - maybe they haven't yet met the 6 months time criteria, or maybe they don't feel that they have unrefreshing sleep, but, regardless, if they seem to have PEM, then they need to manage their activity levels so that they don't end up in push crash cycles that causes them to suffer a lot. If a person with MS or post-cancer treatment fatigue or Gulf War Illness or brain injury seems to have PEM, then they still need to manage their life to mostly try to avoid it. I don't think we know enough to rule out the possibility that someone with one of those conditions does not have 'real' PEM.

ME/CFS was definitely mentioned as a thing in the pathway, and I do think it is a useful label. Having the label means that you are part of a community of people all experiencing something similar.

But really, for now, if a person has chronic fatigue and other symptoms with no identified cause, regards of whether they fit an ME/CFS diagnostic criteria, the clinical management is going to be pretty much the same - supportive respectful care, regular monitoring, assistance to identify things that make symptoms worse or better and make changes to achieve the best quality of life possible, and treatment of specific symptoms such as pain for which there are treatments. Some of the people managed that way will eventually be diagnosed with MS, muscular dystrophy or something else, and some will continue to have the ME/CFS label.

 

[Medfeb]

When I worked with the Heath Pathways team to make clinical guidance for doctors, the pathway we made was for Chronic Fatigue, which included ME/CFS. The reason was that doctors are faced with people coming in with fatigue and associated symptoms and they have to try to work out what is going on. So, the diagnostic process needs to cover the wide range of possibilities - could it be poor nutrition or nutrient absorption, sleep apnoea, some metabolic disease, cancer, brain injury, MS, an infection, over-training, a problem with a medication....? If a particular disease other than ME/CFS is identified, then the clinical care is covered by the pathway for that other health condition.

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.

 

[Hutan]

I questioned that myself, as we created the pathway. Part of it was what was politically possible. But there was also no strong reason to separate ME/CFS out. As I said, the clinical management of idiopathic chronic fatigue (which is probably almost always accompanied by various other symptoms), post-viral fatigue syndrome of a duration of less than 6 months and ME/CFS is essentially the same.

In contrast, the clinical treatment of MS is quite different.

 

[RedFox]

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.

 

[DokaGirl]

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

 

[Trish]

What if a patient doesn't present to the GP with 'fatigue' but with feeling ill (nausea, sore throat, aching all over, dizzy when standing for long, muscles becoming weaker after activity, difficulty concentrating, symptoms ramping up the next day after pushing through exertion etc)?

My question is, why is it 'fatigue' that leads the pathway. Does someone who doesn't mention fatigue but presents with a handful of other symptoms get automatically put on the fatigue pathway for want of another?

My main concern about being lumped with other fatigue is more to do with research rather than diagnosis and management. As has been said, once MS is diagnosed, the patient would be removed from the fatigue pathway and onto the specific MS pathway. Why not a separate pathway for those with clearly diagnosed PEM? While we are left on the general fatigue pathway, for care, it is all too easy for researchers not to see ME/CFS as a distinct condition worth careful diagnosis before inclusion in research.

And it's too easy for clinicians to put is in their 'wastebasket' tired-all-the-time category and not get to grips with the specific symptoms and care needs of pwME. Learning to pace effectively is hard and needs clinicians completely on board with it and understanding the harm they can do when they don't 'get it'. And we need help with other symptoms too.

[I say this as someone with 33 years of complete medical neglect and watching my daughter suffer 25 years of neglect. Not a single clinician has ever done anything helpful for us and the GP who we see sporadically for other things hasn't bothered to learn anything about ME/CFS, still referring to it as 'tiredness' which neither of us has ever complained of to her. Until we get firmly taken off 'fatigue' pathways, I think this will continue.]

 

[Medfeb]

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

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.

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.

 

[Hutan]

What if a patient doesn't present to the GP with 'fatigue' but with feeling ill (nausea, sore throat, aching all over, dizzy when standing for long, muscles becoming weaker after activity, difficulty concentrating, symptoms ramping up the next day after pushing through exertion etc)?

If the person doesn't have significant fatigue/exhaustion/fatigability, I don't think they would qualify for an ME/CFS diagnosis. I'm not saying that ME/CFS criteria are necessarily drawing the right lines around people, but they are what we are currently working with.

Why not a separate pathway for those with clearly diagnosed PEM? While we are left on the general fatigue pathway, for care, it is all too easy for researchers not to see ME/CFS as a distinct condition worth careful diagnosis before inclusion in research.

One problem is that PEM is not necessarily clearly diagnosed, people can have different ideas about it. I don't think Prof Jason really nailed it down. We have members here who say that they don't think they had PEM for years, but they had fatigue and other symptoms. If a person's PEM threshold is very low, they may be in PEM all the time and it could be hard to identify. We need good care for people who don't meet the (rather arbitrary) ME/CFS criteria too.

I don't really disagree with you and to some extent I'm just playing devil's advocate here. There should be a separate pathway for ME/CFS linked from a Chronic Fatigue pathway. But there are certainly benefits in having a Chronic Fatigue pathway and in having a discussion of the concept of PEM in it. One is to remind clinicians to check for an abnormal pattern of exacerbation of symptoms after activity, and to not give advice to push through fatigue unless there is clear evidence that doing so is beneficial in that particular situation. That is especially important in the early days of illness convalescence and in post-infection fatigue syndrome, before the 6 or 4 month period of illness that is part of ME/CFS criteria.

 

[hibiscuswahine]

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.

 

[rvallee]

What if a patient doesn't present to the GP with 'fatigue' but with feeling ill (nausea, sore throat, aching all over, dizzy when standing for long, muscles becoming weaker after activity, difficulty concentrating, symptoms ramping up the next day after pushing through exertion etc)?

My question is, why is it 'fatigue' that leads the pathway. Does someone who doesn't mention fatigue but presents with a handful of other symptoms get automatically put on the fatigue pathway for want of another?

My main concern about being lumped with other fatigue is more to do with research rather than diagnosis and management. As has been said, once MS is diagnosed, the patient would be removed from the fatigue pathway and onto the specific MS pathway. Why not a separate pathway for those with clearly diagnosed PEM? While we are left on the general fatigue pathway, for care, it is all too easy for researchers not to see ME/CFS as a distinct condition worth careful diagnosis before inclusion in research.

And it's too easy for clinicians to put is in their 'wastebasket' tired-all-the-time category and not get to grips with the specific symptoms and care needs of pwME. Learning to pace effectively is hard and needs clinicians completely on board with it and understanding the harm they can do when they don't 'get it'. And we need help with other symptoms too.

[I say this as someone with 33 years of complete medical neglect and watching my daughter suffer 25 years of neglect. Not a single clinician has ever done anything helpful for us and the GP who we see sporadically for other things hasn't bothered to learn anything about ME/CFS, still referring to it as 'tiredness' which neither of us has ever complained of to her. Until we get firmly taken off 'fatigue' pathways, I think this will continue.]

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.

 

[Hoopoe]

With careful history taking, PEM can be diagnosed quite easily for doctors trained in ME (imo)

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.

 

[Jonathan Edwards]

Surely the real phenomenon that there are people who get sicker when they try to exercise makes that a clear diagnostic category.

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.

You talk of ME/CFS being a subcategory within chronic fatigue.

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?

 

[Jonathan Edwards]

To put ot bluntly, why is research ME/CFS mixed together with idiopathic chronic fatigue any more acceptable than choosing a patient cohort from a mixture of POTS and ME/Cfs, or a mixture of heart failure with ME/CFS, or a mixture of people with unrefreshing sleep with people with ME/CFS?

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.

 

[Jonathan Edwards]

But IMO, there's substantial research evidence across multiple systems of an abnormal response to exertion in ME.

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.

 

[Simbindi]

What was the evidence for lumping ME in with 'chronic fatigue' in the first place?

PEM is the key to all this, and it is not fatigue.

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.

 

[Simbindi]

Maybe people without PEM should be advised to rest and pace too - we don't know, do we?

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).

 

[Simbindi]

I say this as someone with 33 years of complete medical neglect and watching my daughter suffer 25 years of neglect. Not a single clinician has ever done anything helpful for us and the GP who we see sporadically for other things hasn't bothered to learn anything about ME/CFS, still referring to it as 'tiredness' which neither of us has ever complained of to her. Until we get firmly taken off 'fatigue' pathways, I think this will continue.

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.

 

[bobbler]

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

 

[bobbler]

"In summary, evidence on effective treatments for ME/CFS remains limited."

Nope there are no objective, real world benefits of any treatments.

"The strength of evidence supporting the use of exercise and cognitive behavioral therapies (CBT) was low."

Nope, there are no real world, objective benefits. Trials using subjective outcome measures in unblinded trials need to demonstrate objective changes. Not been demonstrated. Zero objective evidence.

"In addition, the magnitude of benefits was small to moderate,"

This is regarding subjective outcome measures. Largely meaningless statement. It's expected that in unblinded trials patients will report small to moderate positive changes. It's the placebo effect.

"with inadequate evidence in patients diagnosed with more current case definitions, limited reporting of harms, and inadequate evaluation in severely affected patients."

Yup, we have known this for a long time. Nothing new to add here. Move along. Patients, advocates, charities, academics and researchers been making these points for a long while.

"Methodological and other limitations (imprecision, inconsistency, uncertain generalizability) preclude strong conclusions at this time."

The main issue of lack of objective measures in unblinded trials is glossed over, why?

"Other therapies were shown to be not effective or to require additional evidence to determine effectiveness."

All therapies including exercise and CBT included, it should read and conclude

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

 

[bobbler]

Now that the CDC have spent decades going nowhere, what, if anything is the plan and leadership to bring about change?

Patients really cannot be expected to wait another decade for another report like this

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'