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But you would still be relatively young, and from what you write on here you seem emphatic, analytical and intelligent. Maybe there would be work/study opportunities? I think this would make you a great asset.

I wish you had a permanent funding stream for you work on ME, it seems to me (yes biased) that it is important. And the yearly funding campaign takes you away from that work.

Hope David’s goal will be met shortly. I was wondering if there are no public funding streams for this work?

If only I had a penis sigh, so tired of dealing with the vagina [sarcasm]

But what about the ethical issue of abandoning, and refusal of funding biomedical research into the disease of very ill people? Even worse forcing people to undergo treatments that make them worse? Isn’t very cruel to expect the very ill patients to wait for biomarker research, trials when the...

That reminds me of an article of a very elderly lady (90+). She requested help from her local authority, and before she would be considered had to do a physical training program. But she wasn’t physically capable, that is why she applied for help in the first place.

Has this been researched for ME patients with low NK cells? And if yes, was it helpful?

Isn’t it strange that all the other specialty consultants are cheaper than long covid consultants?

‘Pep’ in the urban dictionary https://www.urbandictionary.com/define.php?term=pep Chalder really wants us on amphetamines haha

Agree with all of you points and adding this; there were no actometers right or were not used? So the distance was self-reported and participants were influenced to do better. Maybe in reality they didn’t but to satisfy their PACE mentors they reported to be able to walk more. If my...

So sorry that happened to you. Very familiar. How much people would have a better quality of life if we were not pushed to do more than we can.

Yann I am so sorry you were treated this way. And that you and your parents were not properly warned and informed.

What makes it hard that it could be many things. I would suggest logging your activities and the poisoned feeling and see if you see any connections. However I know that it is really hard to do that even for me and I know you are more severe. Do epsom salts give you any relief? Or baking soda?

Do you mean what others call a mast cell reaction? Does it occur after eating or certain activities?

Agree

Vocabulary that I would like to change The vague terms: - fatigue/tired have already been mentioned - brain fog, as if I have some kind of mist in my brain. I would prefer terms that are more descriptive such as difficulty finding words, difficulty remembering, etc - flu-like feeling, also vague...

Clarification on my comment; To me PEM has always been ‘ a worsening of symptoms’ that sometimes has a delayed effect. So direct and delayed effect. Now it seems we are redefining PEM as only or mostly delayed PEM. So what are the direct effects after stimuli and exertion? To me it is...

Agree, it seems we are redefining PEM and excluding an important part of it

But if we find better words, we are able to put them forward in advocacy. Now we don’t have the right words.

What about Deteriorating Stimuli and Exertion Intolerance? Advantage; it would add the stimuli. Edit; leave exertion in