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The MEA has published a first stage report on its governance review process. I've posted it here: United Kingdom: ME Association governance issues

The ME Association – Governance Review: Stage 1 Announcement Autumn 2025 October 6, 2025 Some quotes. More at link. In 2025, the board commissioned an independent governance review to understand what is working well, and to identify areas where improvement is needed so that the organisation...

Why would doctors look to a patient organisation for advice on research methodology and quality? Surely I if ANZMES want doctors to do better they need to get someone doctors are likely to take notice of to write the document, like someone with a proven track record of high quality research.

Surely recognising your need for support is a very positive and responsible thing to do. Not immature at all. Listen to that person. The other one hasn't a clue.

Me too. I have begun to wonder whether to rejoin, but I have no confidence they would listen to a few S4ME members, when the majority of members aren't looking this closely and are content with what the MEA is doing.

I'd rather see the charities being independent of the NHS and able to challenge NHS provision, rather than what they seem to be doing with the Tyson project and the work with ICB's where they seem to be paying for projects where they are collaborating closely with existing NHS and BACME...

The one I'm thinking of that is under way is in Canada. I have a feeling there may be another one. Anyway, not much point diverting the thread about this, as we are only speculating about what the trial is.

I am dubious about spending money on this. So long as biomedical studies are done on well defined and carefully diagnosed cohorts that include PEM and chronic disablihg illness not explained by anything else, the rest will be clarified once we have more knowledge of the biology and whether it...

My view on funding an LDN trial is based on the fact that there is already at least one LDN trial happening now. I see no point in duplicating it until the results are known and only if the results look solidly effective.

Thanks for the feedback, @PeterW. While I agree there are some promising signs, the devil is in the detail. While I fully support some of the biomedical research funding allocations, I have serious doubts about some of the other research funding - the Tyson PROMs project, the £100,000 being...

I copied the questions onto this thread because I wanted to be able to come back to them to think about and discuss them. The more I look at them, the less sense they make. Is it just me, or has Leonard Jason's team once again completely misrepresented what PEM is? The first set of symptom...

Almost twice as many authors as participants. No control group, no mention of PEM.

PEM is not a type of fatigue. I wonder whether this is a translation problem, or a lack of understanding.

I would encourage people to do the survey an give and honest response about whether you think they have defined and captured your experience of PEM accurately in the final question. I wrote a quick response and will put it in a spoiler so I don't influence what others write unless you want to...

Question 21 of 43 You will now be presented with a series of Post-Exertional Malaise case definitions. For each one please rate how often (frequency) and how intensely (severity) you have experienced this symptom over the past 6 months. For each, you are asked these 2 questions: Frequency...

Question 2 of 43 1. Over the past 6 months, have you experienced post-exertional malaise, which is defined as an abnormal response to minimal amounts of physical and/or cognitive exertion, with symptom severity and duration out of proportion to the initial trigger? Yes No 2. What were some of...

Copy of Facebook post by Leonard Jason: From the DePaul Group: Are you 18 or older? Do you experience Post-Exertional Malaise? Or are you a member of the general population interested in contributing to research? We are conducting a brief online survey as part of a research study focused on...

How dare they write such garbage about a person they have only read about in the paper. Extraordinarily unprofessional.

A special issue of International Journal of Molecular Sciences (ISSN 1422-0067). This special issue belongs to the section "Molecular Pathology, Diagnostics, and Therapeutics". Deadline for manuscript submissions: 31 March 2026