LTSE - Long Term Symptom Exacerbation - Type 2 ME or New Diagnosis?

[DigitalDrifter]

Because it's not a symptom.

Then how is PEM a symptom if many patients describe it as short term symptom exacerbation?

 

[Andy]

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.

 

[DigitalDrifter]

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.

https://me-pedia.org/wiki/Myalgic_encephalomyelitis

According to the CDC the hallmark symptom of myalglc encephalomyelitis is post-exertional malaise (PEM), which is the worsening of ME/CFS symptoms after minimal physical, mental, or emotional effort.

Are you saying the CDC are wrong?

 

[Trish]

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.

 

[DigitalDrifter]

arguing whether PEM is a symptom or something else is fairly pointless.

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".

 

[Mithriel]

https://me-pedia.org/wiki/Myalgic_encephalomyelitis
Are you saying the CDC are wrong?

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.

 

[DigitalDrifter]

https://austinpublishinggroup.com/physical-medicine/fulltext/pmr-v2-id1052.php

Ellen Goudsmith wrote the following:

Conclusion

The patient has symptoms both of a progressive form of ME as defined above, and of MS. However, the absence of diplopia, true ataxia, spasticity and Babinski signs and the findings upon MRI are not consistent with MS. At the moment, the lack of a recognised ‘label’ leaves individuals with increasingly severe ME in a medical noman’s land. It is hoped that this case history encourages physicians and researchers to study this group, not only to increase diagnostic precision but also to improve the management of this most challenging disease.

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.

 

[DigitalDrifter]

https://theotter.ca/me-cfs-neglected-pandemic/

Canada’s diagnostic criteria list five primary symptoms: persistent, unexplained exhaustion that won’t improve with rest; sleep dysfunction; pain throughout the body; cognitive dysfunction; and the condition’s telltale sign, post-exertional malaise (PEM), sudden flare-ups in symptoms following even the slightest physical or cognitive exertion. PEM’s onset can be either immediate or delayed, and it typically lasts 24 hours or longer.

No mention of LTSE, describing permanent deterioration as a flare up just doesn't do it justice.

 

[DigitalDrifter]

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)

The range of ME/CFS patient recovery was 1-64 days, while the range in CTL was 1-10 days; one subject with ME/CFS had not recovered after one year and was not included in the analysis.

Why did they not include that person though?