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Thanks for this @Dolphin Interesting. I am not at all an expert about the process WHO goes through regarding coding. However, IMHO, it's too early to say COVID does not cause ME. We've only just begun, as the song says to study COVID. I'm completely guessing here, but perhaps the coding...

In conversation with a person formerly in the health care field, they made a point of repeating that patients are viewed as stupid. About believing your pain is real, I was told that, and then offered a Valium prescription. Turned out I had a bona-fide infection not picked up on X-Ray.

I think, very good points. A good way to look at hopefully avoiding PEM: if a pwME feels horrible early on due to orthostatic intolerance, and rests, in other words are forced by symptoms to pace, then maybe PEM can be avoided following exertion. I don't know if I've found that myself. But...

Yep.

So basically, the structure of the brain is OK, but it doesn't function properly. Therefore, the brain is OK, but not OK... :banghead: And, where is this objective proof of brain dysfunction?

In addition to whether post exertional malaise may or may not happen even after light housekeeping, the more immediate affect for pwME who have orthostatic intolerance is lightheadedness and increased feelings of malaise. This often, if not always necessitates resting supine for a period of...

Very well said.

Thank you for talking about the "continuous, profound loss". It is indeed a constant. And the uncertainty you note. I think there are certainties, and I agree there are many uncertainties with ME. The variability of this disease keeps us guessing. For example, how will my symptoms be after...

Another reason pwME may minimize their symptoms is to not complain. "No one likes a complainer" comes to mind. On the other hand, not articulating symptoms can also cause problems at the micro and macro level. If pwME don't advise about their symptoms or they minimize them, those around them...

Well said. Words like "manage", "improve daily coping", and "navigate", are very optimistic when it comes to ME. There is no treatment for this disease. Certainly not mind over matter. ME is not some simple little problem that can be thought away.

That's the thing as you said,"a slow process of understandiing". Most of us have had to come to understand this disease without assistance from medicine. Sometimes even seeing and understanding our own symptoms eludes us.

@Dolphin Agreed. ME is significantly complicated. It can be difficult to sort out the symptoms, and put a ring around each one. People might miss a symptom because other symptoms are more bothersome at a point in time. As well, physicians may need to help people articulate all their...

Thank you very much to these authors. It's not surprising that there were over, as well as under diagnosis of ME. Estimates vary re the percentage of pwLC who develop ME. If we can project from this study, out of 1,000,000 with LC, 580,000 might develop ME. Staggering. Medicine has taken the...

Analyzing someone's presumed thought processes and emotions, a game the whole family can play.

:thumbup: I have read that innovative studies are more favored for funding. Not so, with BPS work.

Hi @JemPD Prior to ME I had lots of aspartame, but who knows if that had any affect on my health in regards to developing ME. It seems there may be many factors. Scientists have been looking at the artificial sweetener question for a while. Earlier this year they said: 2022 Sep...

Maybe substances that we now know change the microbiome, including artificial sweeteners, are another straw on the camel's back.

Loved this article. Nothing is done about this, because many are comfortable with the status quo. They can wield their bias, and block excellent papers from publication. They can do the same for funding applications. They can get their own flawed studies published in prestigious journals, and...

It seems some mental health workers belief in the power of the mind over the physical knows no bounds.

@Simbindi Your chest infection lingering so long sounds terrible. Hope you can get a resolution soon. Take care, and best wishes. :)