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Yes the situation has changed. Still no tangible results for us patients but we're getting closer.

https://www.sciencedirect.com/science/article/pii/S0925443918300061

Playing the scientist here for a moment. A fairly obvious interpretation of these findings is that the inflammation triggered by LPS is just one way to obtain a sickness response. What we call sickness response may be a variety of overlapping responses to illness that vary according to the...

https://www.sciencedirect.com/science/article/pii/S2666354619300298

Sorry to be negative. I can see how it could fail. Needing to recruit about 1 out of every 6 patients in the UK is going to be difficult. I suspect many patients are not in contact with patient organizations or their doctor. It will be very difficult to recruit them. It seems like we should aim...

I wish they'd just get on with it and embrace the lightning process. I'm sure it's superior to anything else in unblinded clinical trials that rely on self reported outcomes. If you discard the skeptical participants first as they usually do.

There is an enormous difference in the emotional functioning between the two cohorts: 70 for the US cohort, 20 for the Spain cohort. Also some other major differences but this one really stands out.

These guys are also going to publish soon. Hopefully these in-depth investigations will finally reveal something about the cause of the illness.

http://onlinesciencepublishing.com/assets/journal/JOU0022/ART00450/1576732660_AJSSH-2020-5(1)-104-115.pdf

Moderator note: See this post in the thread for the preprint.

Importantly: share multiple times, not just once.

Ads on facebook, Google, etc. Medical journals and magazines read by GP could also send the recruitment message and bring in more patients. Allow people to print and spread the recruitment flyers on their own (making them available on the website) and encourage them to do so in their local...

Sickness fatigue.

I agree that I'm sensitive to everything, but different kinds of stressors do not appear to have equal importance. Exertion stands out much more than others. Gut problems related to apparent reactivity to various foods also seem fairly important. I find that I tolerate emotional stress less but...

I changed the title. I originally wanted to examine how to best advocate (after making a list of reasons why we haven't been successfu yet) but then I got tired and distracted. It's also unclear how we can find out what the best way is other than just trying to see what works.

The lack of private funding seems related to "infighting and divided community, every patient organization doing their own thing". If you don't feel part of a community of people with the same health problem as you, then you will not donate to research (or only to research that you feel is...

@Thrish I have added your suggestions. @Michiel Tack that is number 5 on the list.

Some of the commonly proposed explanations for the current lack of funding (of everything): Misogynism, because ME/CFS affects more women than men. Wessely and others said it's deconditioning and (basically) hypochondria and that's why people don't see a need to do biomedical research into...

On further reflection, I think the correct interpretation is that it is impossible to say what is really occurring, but the lack of a control group allows the possibility of all positive effects being merely regression to the mean. Prolonged postinfectious fatigue/symptoms is quite common but...