NIH Intramural study update

bread.

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If healthy cells start behaving abnormally once plasma from patient blood is added and vice versa, then I can't see how this doesn't prove that the problem is elsewhere than in the mitochondria. It is IMO the most significant finding that Ron Davis' group has managed to produce so far because it directly points at the problem being in the blood, not in the mitochondria.

This model also aligns with my own experiences with so called temporary remissions. Once I get ill with a cold, all my ME/CFS symptoms resolve temporarily within 24 hours. Same thing with certain medications and supplements, although frustratingly, they always stop working at some point. Anyway, none of this would be possible if mitochondria were faulty. Davis has also observed this phenomenon, where the patient's cells start behaving more normally in the nanoneedle after the patient had been sick.


https://www.leafscience.org/mitocho...UHSzkrrZ6jB5Z0apD-dFzMllUaLaHnoSDe3Cea-yNkORg


Again, I will say this is no proof of anything, also this work of Davis is not published, there is no data, nothing.
 
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Well, to get this thread back on topic, here's a new publication from the NIH "Post-infectious ME/CFS" Intramural Study:
https://www.frontiersin.org/articles/10.3389/fneur.2020.01025/full

After a couple of years running the study, the investigators decided to convene a series of focus groups to understand what patients mean by "Post-exertional malaise (PEM)". This publication is the result of those focus groups.

NIH Intramural Study said:
Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Background: Myalgic encephalomyelitis/chronic fatigue syndrome is characterized by persistent and disabling fatigue, exercise intolerance, cognitive difficulty, and musculoskeletal/joint pain. Post–exertional malaise is a worsening of these symptoms after a physical or mental exertion and is considered a central feature of the illness. Scant observations in the available literature provide qualitative assessments of post–exertional malaise in patients with myalgic encephalomyelitis/chronic fatigue syndrome. To enhance our understanding, a series of outpatient focus groups were convened.

Methods: Nine focus groups totaling 43 patients who reported being diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome were held between November 2016 and August 2019. Focus groups queried post–exertional malaise in daily life and participants' retrospective memory of post–exertional malaise that followed an exercise provocation with a cardiopulmonary exercise test. Data analysis followed the grounded theory method to systematically code and categorize the data to find meaningful patterns. A qualitative software package was used to move text into categories during data coding.

Results: A wide range of symptoms were attributed to exertion both in daily lives and following cardiopulmonary exercise testing. While three core symptoms emerged (exhaustion, cognitive difficulties, and neuromuscular complaints), participants' descriptions were notable for their unique individual variations. Of 18 participants who responded to questions centered around symptoms following a cardiopulmonary exercise test, 17 reported that symptoms started within 24 h and peaked in severity within 72 h following the cardiopulmonary exercise test. Patients described post–exertional malaise as interfering with their ability to lead a “normal” life.

Conclusion: The experience of post–exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome varies greatly between individuals and leads to a diminished quality of life. myalgic encephalomyelitis/chronic fatigue syndrome patients describe post–exertional malaise as all-encompassing with symptoms affecting every part of the body, difficult to predict or manage, and requiring complete bedrest to fully or partially recover. Given the extensive variability in patients, further research identifying subtypes of post–exertional malaise could lead to better targeted therapeutic options.
 

Wishful

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"Given the extensive variability in patients, further research identifying subtypes of post–exertional malaise could lead to better targeted therapeutic options."

Maybe, but given the extensive variability in responses to treatments, I'm not sure whether this would be a good choice for research funding. I think a better approach would be to study the individuals that managed to find an effective treatment and figure out exactly why the treatment worked. I've proven that PEM can be effectively treated and even cured, but now it's too late to study why/how it worked for me. There must be some others who have found effective treatments that are still working reliably for them.