Educating Doctors in Diagnosing ME/CFS

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Formerhuman

Established Member
I'd like to know what instructions on diagnosing ME/CFS in adults should be taught to doctors. I've checked some recent guidelines, such as EUROMENE and others, but I haven't found clear instructions.

I think that the IOM/NAM 2015 criteria can be used in primary care for screening. The GP performs a workup and rules out common conditions. After that, the GP refers the patient to a neurologist. Before the appointment, the patient fills out the DSQ-1 and SF-36 (I understand that this can be too demanding for severely ill patients and that they require a gentler approach). The doctor then reviews the DSQ-1 and SF-36, rules out other possible conditions, and finally makes a diagnosis of ME/CFS if the patient meets the revised CCC.

Please help me understand how appropriate these instructions would be for educating MDs, or propose your alternative approach.
 
Hi @Formerhuman. Thanks for asking the question.

We have a forum fact sheet on information for health professionals in progress, led by Professor Jonathan Edwards. I think it will be out very soon, it's just awaiting publishing now. It covers diagnosis and I think it will be useful to you.

Formerhuman said:
I think that the IOM/NAM 2015 criteria can be used in primary care for screening.
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That criteria is ok, but Jonathan makes the point that diagnostic criteria tend not to be the last word in diagnosis, even in better established diseases such as lupus. There are a range of ME/CFS criteria, with slightly different requirements, and the requirements can be interpreted differently.

For example, a person with ME/CFS may feel that the IOM requirement that 'fatigue is not substantially alleviated by rest' is not true for them, because a nap in the afternoon does allow them to keep functioning and makes them feel much less fatigued. Similarly, the IOM says 'Unrefreshing Sleep: patients with ME/CFS may not feel better or less tired after a full night's sleep'. But people with ME/CFS frequently do feel less tired after a full night's sleep, especially if follows some nights without good sleep.

I think the CCC is a decent criteria and very good as a guide to the range of symptoms, but a patient may not report symptoms that exactly fit the requirements. For example, pain is required for diagnosis, but not all of our members who identify with a diagnosis of ME/CFS report significant pain.

Formerhuman said:
Before the appointment, the patient fills out the DSQ-1 and SF-36 (I understand that this can be too demanding for severely ill patients and that they require a gentler approach).
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There is criticism of the DSQ-1 on this forum. There's information collected in that survey that is not relevant to diagnosis e.g. marital status and education completed. It has the same problem with sleep and rest as many criteria do. Sleeping and resting are certainly better than the alternative of not sleeping, and not resting during PEM. And yet, the DSQ-1 seems to require patients to say that sleep and rest don't help and don't relieve fatigue, in order to qualify for an ME/CFS diagnosis.

I don't think the DSQ-1 accurately identifies post-exertional malaise. Personally, I think clinicians need to understand PEM well (our PEM fact sheet might help) and explain it to their patient. Then, the patient needs to spend some time, weeks at least, observing their patterns of activity. Monitoring activity with a wearable device and symptom tracking can help to reveal the patterns of activity followed by crashes if the person has the energy to do that. The FUNCAP survey is a good one for establishing a baseline and later monitoring of long term changes in capacity.

As you say, careful evaluation of alternative diagnoses is very important.

An interim diagnosis of ME/CFS, or even just a noting of a suspicion of ME/CFS can be made before the period required in a diagnostic criteria has elapsed. Doctors can give their patient advice about managing their activity levels to avoid PEM well before the six months or four months required for a firm diagnosis.

Formerhuman said:
and finally makes a diagnosis of ME/CFS if the patient meets the revised CCC.
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One last point I'd make is that it is important for the clinician to retain a significant level of uncertainty. Right now, I don't think there can be any 'finally' with an ME/CFS diagnosis. Without biomarkers, it is impossible to be certain that someone has ME/CFS; the clinician should remain open to the possibility that the person has some other health condition. The clinician should tell the patient to see a doctor if there are new symptoms or a significant prolonged worsening of symptoms.

In my experience, people with ME/CFS go through periods of wanting to rule out the possibilities and then periods of acceptance that they do indeed have ME/CFS. If a patient wants to check some other possibility out, even well after the initial diagnosis, and if the investigation is safe and has some rational basis, then I think it can be important for their peace of mind for the doctor to support them. Some people diagnosed with ME/CFS do later find that they have another health condition, sometimes a treatable one, that explains their symptoms.
 
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I agree with Hutan's suggestions.

If they are in the UK, the key symptoms and things to check to exclude other conditions, and outline of severity levels in the 2021 NICE guideline NG206 seem to be useful for initial diagnosis.

The doctor needs to have a good understanding of PEM such as in our S4ME factsheet, and listen to the patient's description of not just symptoms but how their activity affects them.

I would not recommend using any questionnaires for diagnosis. The doctor needs to listen to the patient and ask questions.

After diagnosis, for getting some idea of the level of disability and loss of function once the patient has tracked their symptoms and how the relate to their activity for a while, the FUNCAP questionnaire may be useful. It's the only questionnaire I have seen that is able to elicit a good reflection of living with ME/CFS.
 
Kitty said:
Comes in waves?
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I think this might be a reference to infectious epidemics/pandemics that cause notable increases in the rates of new-onset ME/CFS across the population.
Kitty said:
Biopsychosocial theory useful for all chronic diseases?
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He says that the psychosocial factors are no more important for ME/CFS than they are for RA or heart disease, that the BPS model has been misused to classify ME/CFS as psychosomatic, that the bio-aspects should be the obvious starting point, and that it has been a failure of research when the psychosomatic factors are prioritised.

I guess this might have been a way of letting BPS practitioners save face and get them to consider ME/CFS as a biological condition without having to abandon their framework completely.
 
Formerhuman said:
Thank you, @Hutan, for the detailed reply! It's great that a factsheet on diagnosis is coming. Was there a thread with a discussion? I would be interested to take a look at different opinions.
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It’s not a factsheet on diagnosis per se, it’s for health professionals to get a general overview of what ME/CFS. I think @Jonathan Edwards has explicitly said that it’s not supposed to be a guide at all.

Here’s what it says about diagnosis in the latest public draft, it pretty much refers to NICE NG206.
Jonathan Edwards said:
Diagnosis and Assessment

There are no diagnostic tests for ME/CFS, but tests to exclude other illnesses are important. The UK NICE Guideline NG206 gives a good summary.

Several suggestions for ‘diagnostic criteria’ exist but, as for other chronic diseases, are of little direct relevance to clinical care. Someone should not be told they do not have a condition if they do not fit a set of criteria at a particular point in time (whether ME/CFS or lupus). Care and advice must be based on probabilities for the future and clinical diagnosis must reflect that. As indicated above, a diagnosis of ME/CFS centres around long-term, otherwise unexplained, disabling symptoms associated with the atypical response to exertion of PEM. Diagnosis is often relatively simple, but a proportion of patients prove to have other unsuspected diagnoses with time; repeated re-assessment is an important part of long-term care.

Level of symptoms and disability fluctuates in ME/CFS, particularly in relation to PEM. Assessment needs to reflect this, rather than being based on a single point in time when the patient may have been able to attend only because they are at their best.
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I also think that one of the key points that will often be neglected by GPs is the repeated re-assessments. We hear far too many stories about pwME/CFS having been misdiagnosed and instead having a treatable condition, or having new or changing symptoms being dismissed as just ME/CFS when they could be something else.

That is not helped by many believing that ME/CFS isn’t real or is psychosomatic or a result of deconditioning.
 
CCC is probably overly strict. But that is a good starting point, IMO. Given the lack of effective therapy, there isn't much value for diagnosis anyway other than excluding other treatable conditions. And you'd want to explore all other possibilities before settling and resigning.
 
I believe that diagnosing ME/CFS is necessary and important. I agree with @Utsikt that reassessment is necessary, but I see another issue among patients: some of them spend money year after year hoping to find the “real disease”.

Depending on the country, a diagnosis is necessary to receive disability benefits. Recognition of ME/CFS may bring huge relief to patients and improve relationships with family members. In my opinion, for such a severe disease there must be a patient registry.

So, the IOM/NAM 2015 or NICE criteria may be used for screening in primary care. How should neurologists make a diagnosis? All criteria and questionnaires have downsides and have been criticized by patients, but I believe a better option should be established. What should I say to a doctor who is collaborative but has no time to read five consensus documents that do not contain clear answers?
 
Formerhuman said:
So, the IOM/NAM 2015 or NICE criteria may be used for screening in primary care. How should neurologists make a diagnosis? All criteria and questionnaires have downsides and have been criticized by patients, but I believe a better option should be established. What should I say to a doctor who is collaborative but has no time to read five consensus documents that do not contain clear answers?
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I realise that it seems strange but I would like to emphasise, as a professor of medicine who has thought deeply about this for decades and written papers on it, that diagnostic criteria are not the basis of good clinical care. The very fact that we have complex criteria proves that there is no simple way to separate people 'with disease X' from those 'without disease X'. Since a very large proportion of people fall somewhere on the edge it is seriously unfair and often dangerous to assume that there will ever be perfect criteria.

Using criteria in the clinic is bad medicine. I have never ever used diagnostic criteria over 50 years. I have always tried to weigh up, using all the knowledge I have, what the likely future is for someone who needs care.

I realise that disability benefits depend on diagnoses. But what about the poor people who for some reason do not fit this or that criteria but who are seriously disabled? All we need are some diagnoses that doctors can tick if they think it is reasonably fair and safe to tick one of them for someone who needs support. Whether or not those criteria pick out one disease rather than another in medical or scientific terms does not matter.

Giving doctors recipes is the road to bad medicine. A good cook does not depend on recipes more than 10%. The other 90% is knowing how to produce good food. Medicine is the same. That does not mean it is imprecise. The excellent cook is totally precise. Unfortunately medicine is much sloppier than cooking because much of the time nobody knows or cares if things are got wrong. But the solution is not to reduce everything to recipes. That ends up like portioned butter and ketchup packs in a bowl.
 
Jonathan Edwards said:
Giving doctors recipes is the road to bad medicine. A good cook does not depend on recipes more than 10%. The other 90% is knowing how to produce good food. Medicine is the same. That does not mean it is imprecise. The excellent cook is totally precise. Unfortunately medicine is much sloppier than cooking because much of the time nobody knows or cares if things are got wrong. But the solution is not to reduce everything to recipes. That ends up like portioned butter and ketchup packs in a bowl.
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I'm veering off-topic but I want to push back against this a bit. Actually, giving doctors recipes can be the road to 'adequate medicine most of the time'. That is often a vast improvement over what would happen without the recipe. A recipe is not a requirement. It can be adjusted or even abandoned if the cook has confidence.

If a chocolate cake is needed, I am happy if there is a well-tested recipe for the person cooking to follow and if the person is willing to follow the recipe unless they have well-founded confidence that they have a better idea. The recipe, a willingness to follow it and a good knowledge of how to follow a recipe gives a reasonable chance of an adequate result.

Some doctors say 'medicine is an art not a science'. They act as if guidelines are an affront to their intellect. They say 'don't tell me what to do!'. They seem to believe that they can automatically intuit what is the best thing to do. And, no doubt, some of the time, especially for things where they have a lot of experience, they can. But, some of the time their prejudice or their lack of knowledge or the persuasive talk they heard promoting the Lightning Process at their last GP conference will take them in a completely wrong direction.

Recipes or guidelines create transparency. Making them requires time - time for the literature to be properly reviewed, time for a range of experts including consumer representatives to be consulted. Good guidelines increase accountability and equity. It's a way to say 'this is what we know and why', creating a position that can be challenged and improved upon over time.

If a doctor knows basically nothing about ME/CFS, following a good guideline and using a good diagnostic criteria is a lot better than nothing. Would I prefer the doctor to have seen so many patients with ME/CFS symptoms and to be so lacking in unfounded prejudice that they have a correct sense of what ME/CFS is and what to do with the ME/CFS patient in front of them without needing a guideline? Sure. But, such doctors are currently not common.
 
I agree with Hutan, doctors need more than to use their current knowledge and experience.

Every doctor I have seen in 3 decades who sees ME or CFS on my notes tells me to try to get more exercise. One who was a consultant who was supposed to have a special interest in ME suggested I try a very expensive quack therapy akin to LP. All of them assume my only ME/CFS symptom is fatigue. My other symptoms are assumed to be stress related.

Doctors need guidelines such as the current NICE guideline sections on diagnosis to help them. Better still they need our fact sheets. When conditions are so misunderstood and when their instinct tells them that fatigue = need for exercise and sleep hygiene, we get the current disastrous situation.
 
I’m not sure the inadequate doctors would care much about any diagnostic guidelines. It’s incredibly difficult to ensure adherence for even the basic stuff, let along complex topics.

That’s assuming it’s even possible to create such guidelines, which it probably isn’t. ME/CFS just has to be one of many things the doctors have to consider.

Meaning that what they need is knowledge about what ME/CFS is and isn’t, and how to best help the patients. NICE NG206 provides that already, and our factsheets will probably be a positive addition if they are taken up the people that are able to spread them.
 
Hutan said:
If a doctor knows basically nothing about ME/CFS, following a good guideline and using a good diagnostic criteria is a lot better than nothing. Would I prefer the doctor to have seen so many patients with ME/CFS symptoms and to be so lacking in unfounded prejudice that they have a correct sense of what ME/CFS is and what to do with the ME/CFS patient in front of them? Sure. But, such doctors are currently not common.
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But this just perpetuates the current disaster.

A doctor who doesn't understand should refer to one who does or start shouting at the top of their voice that there is no adequate service. Giving recipes to people who have no clue, is, as we are discussing on a daily basis, a recipe for perpetuating crap care.

It would be great if the NICE guidelines were foolproof, just as it would be great if a recipe for raspberry pavlova were foolproof. But we have realised that it isn't like that. I will get to grips with the response to BACME when I get home but one of the things I would push back against is arguing on the basis of 'NICE compliance'. The NICE recipe wasn't as bad as before but it was based on a lot of bogus stuff like GRADE and ended up allowing therapists to do what they like.

I don't think we should sink to the level of saying that the kitchen staff should follow recipes because they don't even know how to boil an egg. Hospital physicians never work according to guidelines. They have read the papers that guidelines are based on and discussed policy in much greater detail. They do things for good reasons. At least if they are any good. But the obsession with dumbing everything down to GP level has threatened even intelligent hospital care.

I understand what you are saying but to get back to the thread I am absolutely certain that if a doctor has to use diagnostic criteria he shouldn't be allowed anywhere near patients. Diagnostic criteria are not a sign of precision. They are a sign of foolish consistency in a world that is not consistent and has to be treated as such. This has nothing whatever to do with 'the art of medicine' or 'clinical experience'. But it does have to do with the recognition of how best to predict reliably. (The irony being that I learnt as a student of art history that the science of art history is a darn sight more rigorous than medical science.)
 
Jonathan Edwards said:
A doctor who doesn't understand should refer to one who does or start shouting at the top of their voice that there is no adequate service. Giving recipes to people who have no clue, is, as we are discussing on a daily basis, a recipe for perpetuating crap care.
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How do you get doctors to do this, though?

You’re asking ignorant people to acknowledge their ignorance, and to be able to recognise who know better than them. In a system that stems from pure authority and eminence.

My GP just pawned me off to one of the «specialists» that recommends everything from LDN/LDA to vacations to the dead sea, and thinks I’ve got a good prognosis because my face doesn’t look like I’m completely apathetic when I speak.
Jonathan Edwards said:
Hospital physicians never work according to guidelines. They have read the papers that guidelines are based on and discussed policy in much greater detail. They do things for good reasons. At least if they are any good.
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The hospital refused to see me for suspected ME/CFS because my GP forgot to write that I experience pain (so I can’t possibly have ME/CFS according to the criteria), despite having a recommendation from one of the hospital infectious disease doctors to do a full assessment.

If we have to rely on people being good at their jobs, we won’t get anywhere anytime soon.

So what can we do?
 
There is something to follow: do no harm and don't make things worse. If a guideline helped a doctor recognise that there's a serious condition centred around PEM and that advising exercising and pushing through is the very worst thing to do, as Trish says that would be an advance.

I just posted an example from Reddit of people who were advised badly and are now screwed. There are a number here eg as with Utsikt's comment. When initially mildly affected I was told by a well-regarded professor of medicine (endocrine) to keep going to the gym and exercising (and don't be "hypervigilant" :rolleyes: ). I might now be in a milder situation or even have simply slowly spontaneously recovered, if I'd been given more sensible advice or had a guideline available to review to give me an understanding of PEM at that possibly critical juncture of disease onset.
 
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