“Dr. Ken Friedman and Dr. David Maughan – ME/CFS and Long Haul Covid Similarities and Ramifications” podcast

[Jonathan Edwards]

I've never known 'malaise' to involve a rheumatic feeling in joints and sore muscles that even if the world's biggest couch potato was made to do World's Strongest Man would not be able to replicate.

That is pretty much what malaise means in medical terminology.
It is what people with prostrating infective illness like typhoid have - very much involving joint and muscle pain.
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This post has been copied and following discussion moved to this thread:
Meaning of the word 'malaise' and its use in the term Post-exertional malaise (PEM)

 

[Andy]

For what it's worth, given the range of opinions expressed on this forum on members experience of their illness, and how they describe their symptoms, I believe that an attempt to create a new definition for ME/CFS, without new, and replicated, evidence to support it, would just be a waste of energy and time and that, should it be adopted following its development time, it would set back and confuse any recent progress we have made and might make in the time before adoption.

It makes far more sense to me to be pragmatic and accept that where we are with definitions, as imperfect as they currently are, gives a point to build upon and accumulate evidence. Evidence which, in time, will then allow us to improve the definitions and perhaps identify sub-types. I don't see this as giving ground, I see it as holding the ground that we have and moving forward from it.

 

[alex3619]

I believe that an attempt to create a new definition for ME/CFS, without new, and replicated, evidence to support it, would just be a waste of energy and time and that, should it be adopted following its development time, it would set back and confuse any recent progress we have made and might make in the time before adoption.

There is only one reliable way to do this - find a diagnostic biomarker. We need to back further investigation of existing biomarkers, plus look for new ones. For example, given we have thousands of biological abnormalities, there is a need to test many of them in combination to see if they are diagnostic used this way. The problem is these markers are often in separate studies so its difficult to just look at existing data. If we could get a study that combined testing all the most promising markers in one single cohort, perhaps divided to test a putative marker set once discovered, we might find something useful.

Meddling with definitions at this point, with all the existing muddle, would be a huge problem. Backing an existing definition, such as ICC, is still desirable though, but a diagnostic biomarker might rapidly make all current definitions obsolete.

 

[duncan]

That is pretty much what malaise means in medical terminology.
It is what people with prostrating infective illness like typhoid have - very much involving joint and muscle pain.

Malaise???
How about arthralgia and myalgia? Does anyone think malaise is better that these two medical terms at describing joint and muscle pain, with all the connotation baggage malaise foists upon its recipients?

Sorry, I'm not trying to pick on @Jonathan Edwards, it's just this is indicative of what I have been struggling to say. We need to get better with word choice when describing our disease. We've inherited a cesspool definition. Im not suggesting changing the definition. I'm suggesting being a little more deliberate about describing it.

I believe that an attempt to create a new definition for ME/CFS, without new, and replicated, evidence to support it, would just be a waste of energy and time and that,

I agree. So we don't create a new one. We just rework the wording with an eye to making that same definition something less like a burden and more like an aid.

There is only one reliable way to do this - find a diagnostic biomarker.

Meddling with definitions at this point, with all the existing muddle, would be a huge problem. Backing an existing definition, such as ICC, is still desirable though, but a diagnostic biomarker might rapidly make all current definitions obsolete.

We could do both. I have no doubt about modifying wording for the better. It's getting agencies to adopt it where problems will pop up. They won't want to, they will resist - and for good reason.We can be a major expense if the literature accurately reflects our disease burden.

But it shouldn't be about what benefits insurance companies and state accountants etc.

 

[Trish]

Some posts have been copied or moved to a new thread:
Meaning of the word 'malaise' and its use in the term Post-exertional malaise (PEM)