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Post moved to USA - Mayo clinic - review of a doctor there

We have a new petition update today: Thanks to our supporters Thank you to the 11,300 people supporting the campaign from 76 countries. Thank you also to The Grace Charity for M.E. for adding their support to this campaign. We now have 76 organisations calling for the 2019 review to be...

I know that people can and do learn new things, and I don't expect people's expertise to only be defined by a qualification they gained years ago. But, I think Gladwell's PhD topic and subsequent promotion of TENS says a lot about the way he thinks. The evidence for the effectiveness of TENS is...

I see from @Sly Saint's post on another thread here, that AfME has acknowledged S4ME discussion in a revision of another document. But that document still has problems, so it's almost worse, to be listened to and yet our points mostly ignored. We've been heard, our name is now on the document...

Is there any way we can get someone in AfME to read this thread and respond? You would think that an organisation dedicated to advocating for ME/CFS would see the forum as a useful window onto how their initiatives land with people with ME/CFS and would be monitoring it. Failing a proactive...

Welcome to the forum @jnmaciuch. Looks like you are going to fit right in. I hadn't seen this before, taken directly from the PACE Participant Manual: You write very well. I think a paper examining the harms of the CBM beyond physical harm would be useful. Just some of the interesting points:

I appreciate that the authors thought this was a topic worthy of working on, and I also appreciate some of their recommendations. But, there are too many substantial omissions to make the results credible. The model they have used is incredibly simplistic - it would not be terribly hard to...

To reiterate - the costs do not include losses caused by long Covid beyond six months! The analysis completely ignores the lifetime loss of productivity that a substantial proportion of people who develop Long Covid likely face.

That's an interesting point - that the WHO's recommendations about vaccination didn't consider a possible lower risk of Long Covid. They note that Australia also didn't consider Long Covid in making a decision about immunisation. Not considering the risk of Long Covid with re-infections seems...

If they want to get into claiming results that aren't statistically significant, they might want to talk about the mean D-dimer increasing in those who did the physical training. That didn't make it into the abstract. Increased d-dimer can be indicative of problems in the coagulation system...

How can the authors write that as the conclusion of the abstract, having just told us that: there was no significant decrease in IL-6 or fibrinogen, and presumably also no significant change in the other two molecules tested (ACE-2 and D-dimer). there was no significant difference in quality of...

Typos - e.g. two in the first paragraph of the Introduction This idea that a patient writes a "care plan", and then finds a health professional to sign off on it - it's nonsense. The process of trying to get a health professional to sign a wishlist written by the patient is likely to be...

The authors recognise that the monitoring period was too short. This study was not a terrible start to the use of activity monitoring to better understand ME/CFS. It was a start. What is terrible is that, 25 years later, we really don't have much more of an understanding about what is going...

They are noting that the average activity decreased in the second half of the post-exercise week for the CFS participants. But, that the CFS participants were active for more hours, resulting in similar total daytime activity to that in the first week. And then they conclude that "the delayed...

The bolding in the last quote shows that people did understand the need for objective measures 25 years ago.

Use of technology Impressive to be using an activity monitor as far back as in the 1990s, when there are researchers telling us that even now there is no suitable technology to produce useful objective outcomes. @sarahtyson That quote may be useful sometime e.g. when commenting on the PACE...

Thanks for posting about Grant Illingworth, SNT. Dr Richard Webby was just on Radio New Zealand Sunday Morning The recording isn't up yet, but I will update the post when it is. (Link since updated) https://www.rnz.co.nz/news/covid-19/525469/covid-19-will-be-with-us-forever-flu-expert...

Of course, there's not one single coherent story that is the 'BPS mechanism'. I expect there are some BPS people who have suggested that deconditioning is the cause of symptoms and if you fix the deconditioning, you fix the CFS. I think that idea, much like the idea of causal childhood trauma...

I note that non-return to work could be due to a range of factors, not just personal health status. The health of a family member, changed life priorities/assessment of risk and the ongoing presence of the job could all affect work return rate. Future work could look at the impact of the...