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"The mental health benefits of work are well-estsblised". Unless, your employer or some of your co-workers are bullies, sexually harass or assault you, your work load is unrealistic, you work in a sweat shop, you work in unsafe/unregulated conditions, you are expected to work for low, or no...

Hi @kilfinnan Your story is interesting. Is an oxygenation compressor, also called a hyperbaric chamber? I've read that hyperbaric chambers may help pwME. I don't have any experience with these, though. ETA: Hi @kilfinnan, I looked this product up, and see it's not a hyperbaric chamber.

Exactly, there "ain't no boom!"

The use of the term "Boom and Bust" to describe my activity level, and dare I say many other PwME, is ridiculous. It makes members of our community sound silly, as if we have no insight into our disease, no wisdom, lived experience, or self control. As if we need help from some misguided...

OMG.

Oh yes. I delved into thyroid issues following my diagnosis of ME. This was because, at the time of course ME was just called "cfs". And, what is that really? So, I researched a lot about causes of fatigue. I found that there can be a lack of knowledge about thyroid problems. For example, the...

Early on, with ME in my 30's I would smell nice fragrances from flowers, but they all had a metallic smell. This lasted many years. I have no idea if this was part of my ME or not. I have lots of allergies, so perhaps it was part of that. Who knows... I echo others here who have said medical...

Good question about accuracy. I wish I knew the answer. I had this test done back in the 1990's. I saw a doctor who specialized in thyroid problems among other health issues. I was diagnosed with hypothyroidism 8 years before my ME started. Looking back, and comparing to the disbelief about ME...

Good to see a focus on viruses, and their not inconsequential affect on human health. My own example is hypothyroidism. The cause deemed a virus. Several years on, I learned this is Hashimoto's, an autoimmune disease. Unfortunately, given the one autoimmune disease, medical thoughts seemed...

I don't understand why researchers seemingly quite familiar with ME use the Fukuda criteria.

The authors in the Lancet supporting the functional disorder paradigm want, or expect research to pinpoint simple causes of diseases. Seems to me that's an out-dated view of disease.

Problems with this study aside, it would be interesting to know if the pwLC for 547 days, and others with longer term or significant durations remained in the trial, and how well they did.

Absolutely! I was just making sure that those reading, who may not know this disease, don't think mild and moderate cases of ME are a cake walk, in comparison to severe and very severe ME. This disease, is indeed all bad! Many of us suffering in the mild to moderate to moderate/severe ME range...

Thank you again @dave30th for your follow-up article. It is desperately and horrifyingly frustrating to read of these situations. Where much of health care systems are concerned, pwME and those who care for them, might as well be screaming inside a soundproofed box. I agree with @Peter...

Thanks @Mij for contacting the author. OI is so very difficult with its multiple symptoms and effects. It would at least be a step forward to have more wide spread medical knowledge about this troubling symptom for pwME.

Thank you to these authors for highlighting orthostatic issues in long COVID. We need the same focus on POTS etc., for ME. I have POTS, and have tachycardia while upright, as well as while supine. IME, cardiologists were very disdainful of "cfs", as of course were most other medical...

Canadian actor, Michael J. Fox, has had Parkinson's for many years. His foundation has raised a billion dollars for research into this disease. ETA: research info from the Michael J. Fox Foundation: https://www.michaeljfox.org/research-news

Good idea! Would be great to have that effect from vaccinations. An EBV vaccination is being worked on, i believe. I'd get in line for that. None of my 5 COVID shots have had that effect.

Amazing, and yet not, how some "experts" can casually discard millions of those suffering with conditions yet to be understood. Do none of these people acknowledge advances in medical science? Over time, we have learned about diseases, and developed treatments. We're not done yet! To say...

Hubris.