Discussion in 'General ME/CFS discussion' started by DigitalDrifter, Jun 2, 2022.
Then how is PEM a symptom if many patients describe it as short term symptom exacerbation?
First, ME Research, who you were originally criticising, describe it as "a feeling of being unwell (post-exertional malaise) that is not improved by rest, and can be worse after physical or mental effort".
Secondly, I've just Googled "short term symptom exacerbation", and found no results for that phrase connected with ME, so I can't find any evidence of "many patients" describing it in that way.
But ultimately, if we define PEM as an exacerbation of symptoms however we phrase it, I personally agree with you that PEM itself is not a symptom.
Are you saying the CDC are wrong?
I suspect arguing whether PEM is a symptom or something else is fairly pointless. I understand it is perhaps better described as a feature of ME/CFS, since it includes both increases in multiple symptoms and reduced function. But if the features of ME/CFS as experienced by patients are to be listed under the heading symptoms, then PEM needs to be included.
Similarly trying to split different timescales for how long the effects of pushing over our limits last into short term PEM and longer term relapse, or giving it new names like long term symptom exacerbation may be an artificial division of something that may be a continuum of the same thing. Provided descriptions of PEM include the possibility of long term worsening, which I think they should, then I don't think we need multiple terms.
It's important because if it's not classified as a symptom then you're letting skeptics/medical professionals get away with practising Quantum Medicine when they say "We're not saying your symptoms aren't real".
The CDC were the authors of the confusion surrounding ME and made the lives of patients hell for decades. They have made some changes to their stance but they are not our allies. Anything they have got right is because they were forced to change, not out of goodwill or a desire to do the right thing.
There are few authorities working to help us which is why the present NICE guidelines were such a shock but feel so precarious.
Ellen Goudsmith wrote the following:
That's where I think myself and other LTSE sufferers are, there's a diagnostic gap which the medical profession rather than come up with appropriate diagnosis, are happy to let us suffer being labelled as hypochondriacs.
No mention of LTSE, describing permanent deterioration as a flare up just doesn't do it justice.
Hurray, found a paper that acknowledges LTSE: https://pubmed.ncbi.nlm.nih.gov/36984572/ Recovery from Exercise in Persons with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
Why did they not include that person though?
Separate names with a comma.