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Welcome to the forum sveinnb. I think there's a good chance that you are right about the importance of autoantibodies in at least subsets of ME/CFS. I haven't read the paper, but I'm not surprised that the authors seem to have found more autoantibodies that have clinical significance in SLE...

From the bit of the paper I read, the author isn't saying we have to be positive. It's mostly just that people talking about their chronic illnesses on YouTube try to make themselves look nice so they aren't judged harshly. I'd argue that that is true for most people regardless of whether they...

It's nice though to see the development of an approach to differentiate a normal cell from a cell that has suffered oxidative stress. I guess the next step for this team will be to use their approach to look at cells from people with ME/CFS to see if they look more like the healthy cells or...

While I appreciate the big commitment Dr Friedman has made to ME/CFS and the sacrifices, I despair that someone who has been involved over such a long period of time in shaping how medical professionals see ME/CFS can still be coming out with that: He says they are 'certainly worth a try'...

Consequence1 : Side effects that are hard to differentiate from the disease Consequence 2: Slowed progress to find a good drug I'd add that having a treatment in the arsenal, even one that doesn't really work, reduces the political pressure on funders to keep looking for a good treatment.

That's a good point. Perhaps we have swallowed the BPS world view. Perhaps we should just be using 'medical' instead of 'biomedical' in our subforum names . With 'medicine' being 'the science or practice of the diagnosis, treatment, and prevention of disease', pretty much any medical practice...

Ah, that makes more sense, although he's been no less patronising. I've edited my post

So Caspar Schoemaker leaned over to the young woman sitting next to him and 'kindly' asked her a question? In some avuncular way, this man thought he was bestowing a kindness on her, by being interested in her views? And then he wrote a blog about it, ripping her to shreds, speculating whether...

@Channa offered some similar thoughts about survey design in their comment about the EMEA survey EMEA Pan-European ME Patient Survey I think understanding the difficulties and accuracy of various approaches to data gathering about ME/CFS onset would be a useful Masters study. Clearly...

Thanks @Mark Vink, excellent.

I had a momentary double-take when I first read this. For the benefit of those not familiar with the colloquial phrase 'just hit me' - it isn't some sort of invitation. It means 'I have just realised'. :)

It's very difficult to make a clear set of questions gathering onset information that work for everyone. I agree that there needs to be multiple options - in my case, the onset when I was in my 40s involved an infectious illness, which was probably the main thing. But there was also possibly...

Huh? He had meningitis at some point, and then Covid. Then he temporarily loses the power of speech, gets ME/CFS symptoms and is diagnosed with functional neurological disorder? There are neurological reasons why someone may not be able to speak but can sing e.g. Broca's aphasia: And...

We've moved posts about a request for information from people with multiple pain conditions to here: 2021 Guardian Australia: Request for contact from people with multiple chronic pain conditions

I think it's still a big problem, as Graham's video and our discussions have shown. If you think your pain is pretty bad, and then you are told that actually it's not bad, it's actually pretty normal, you are likely to change your frame of reference. I haven't read the paper yet, but I don't...

Ugh. I think it's worth writing to the University. It might be a good opportunity to draw attention to the quality of the research going on associated with that clinic. There was that amazing episode of the recruitment strategy for a CFS trial that involved posters asking 'Are women with...

I most often use screen shots. On my laptop I press control; command; 4, and then select the area of the table. Then the screenshot can be dragged from your desktop screen into your draft message.

Not exactly what you are after, but more data on triggers. Presumably if a trigger is identified, it's more likely that onset wasn't gradual...

That's a good point. I thought this short article was good: The Conversation: Explainer - What is Seroquel and should you take it for insomnia?

Speaking personally (not with my moderator hat on): If doctors are prescribing unevidenced treatments, or unevidenced treatments are being promoted on social media, I think it's good that that is posted about here on the forum, including personal experiences with the treatment. I hope this...