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Anonymisation sounds great, unfortunately it does not always happen, is not always done correctly. Even if it is anonymized, as @Nightsong says, combining the anonymized data with other datasets, data can be traced back to individuals. And it is also used by another country, where you have to...

WHY??? Seems very irresponsible.

Exactly this, it seems like making fun of people who have these complaints.

Literally and figuratively haha

Do researchers get credit these days for coming up with these ridiculous titles?

Yeah let’s not put in any effort to prevent disease or try to cure/ mitigate symptoms, let’s just harass and hound the sick and disabled.

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.

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...