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There's a copy of the Rapid Response on the MEAction website here https://www.meaction.net/2023/07/12/meaction-uk-submits-a-rapid-response-to-the-jnnp-in-support-of-nice/

I notice how old most of the references are. And the idea that fatigue started with the industrial revolution is completely bizarre. Oh dear, and this sort of nonsense earns a Masters' degree?

Posts about the upcoming closing of the UK Cochrane office have been moved to News from Cochrane

I had a quick read through. I think, as Hutan says, they have come to much the same conclusion as in our discussions here, namely that there's not sufficiently robust evidence that microclots have anything to do with LC specifically, that the published research is of mostly poor quality, and...

The next tweet say: Deale A, Chalder T, Marks I, et al. Am J Psychiatry. 1997;154(3):408-14. Sharpe M, Hawton K, Simkin S, et al. BMJ. 1996;312(7022):22-6. The PACE trial: White PD, Goldsmith KA, Johnson AL, et al. 2011;377(9768):823-36. I just asked for the source and see you have done so too...

Posts discussing the date of origin and source of the term PEM have been moved to PEM discussion thread

That's fantastic news. Is the shortfall mostly in the post Covid diagnosis group?

I don't trust anything coming from a focus group in this sort of situation. It's far to easy for the person leading it to use leading questions and to direct the discussion away from anything negative, and to focus discussion on positive aspects. An anonymous questionnaire with open ended...

https://pubmed.ncbi.nlm.nih.gov/12069875/ Item list 1. Aches and pain 7. Sadness 2. Muscular tension 8. Sleep disturbances 3. Fatigue 9. Autonomic disturbances 4. Concentration difficulties 10. Irritable bowel 5. Failing memory 11. Headache 6. Irritability 12. Subjective experience of infection...

Well done Caroline. I agree the What do they know system works well. I found it surprisingly good, including the way it dealt with correspondence to clarify my request and get answers.

The comment on Twitter Jaybee posted is by Natalie Shure and says: The responses on Twitter are a mix of people saying Long Covid isn't real either and people criticising Shure.

Can't access the main paper, but I see they include ME/CFS, and it seems inevitable that the recommendations include CBT/GET.

It looks like this is a data analysis project using metabolomics data from a repository. I can't open the supplementary material to find out the data source. It seems to be all female and probably diagnosed with ICC or CCC from the description in the discussion section. The sample was 26 each...

Sounds ominous. GET anybody? If anyone has access to the full article - does is suggest what interventions they are recommending?

Perhaps it is suggesting that if someone's depression is entirely caused by very difficult life circumstances, then giving them antidepressants or therapy isn't the solution. The solution is to provide them with decent housing, remove the bullies, treat the physical symptoms etc.

Would it have been found, given that few people with very severe long lasting ME have been throughly investigated as they are too sick for things like scans, muscle biopsies and CSF sampling.

The alerts being based on the Workwell data would have me being alerted too much too, as their recommendation is resting heart rate plus 15. Most of the time when lying down or sitting with legs horizontal I can stay below that, but once I get up and start doing stuff for more than a minute or...

It would be interesting to hear from the researchers involved in both this year's in person IACFSME conference in comparison to last year's online conference. In that case the conference was not just a set of online lectures. It was in an online virtual conference centre where people attending...

Thanks Caroline.

Doesn't surprise me that he's still recommending GET. He says in his book from post NICE 2021 that it should still be available as it 'helps some people'. https://www.s4me.info/threads/living-with-me-and-chronic-fatigue-syndrome-penguin-book-coming-up-22-sept-2022-bps-views.29552/ He runs a...