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The specialist nurse (paediatric) tried suggesting that it was the stress of GCSE's that caused my daughter's ME!! She developed it after viral labyrinthitis in the October, so at least 4 months after her exams finished. It was in the days when there was a fair amount of coursework and exams...

This may be the link: https://www.meaction.net/2020/04/30/thousands-add-messages-to-6-m-long-card/ As NICE continued to refuse to add a warning re GET to the current Guidelines, MEAction UK asked for PwME to send in their experience of the harms of GET or to sign in support of adding a warning...

The BPS "reasoning" is so simplistic. If ME physiology was so straightforward everyone would get better, easily. My daughter and I had jet lag following an overnight flight back from USA in 2018. (Longstanding friend in US who I hadn't visited for 30 years). I was pretty good after my first...

Patronising rubbish. That's a very polite way of putting it @Blueskytoo "In a study where the sleep patterns of healthy volunteers were deliberately disrupted to make them similar to those of people with CFS, they developed symptoms similar to those of CFS, including feeling unrefreshed and...

I was looking tnrough these last week and now can't remember where they are!! I think I saw @Andy make some comments on another thread. Will keep looking ETA p62 onwards: https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-7 @Robert 1973

Interesting blog by Coyne, includes the role of SMC in the promotion of the original paper. No Tsunami of Mental Illness Accompanies Covid-19 Why did the media get a scientific study so wrong? Because they mostly relied on friends of the authors to interpret the peer-reviewed paper.

It seems as though the Countess of Mar is somewhat taken by her views.

Not impressed with her response to the above question. CFS is used very widely in the US ETA Trish's question was the first to be asked

Yes, it will be interesting to see if NIHR can provide information on the amounts allocated to this type of research, for PhDs etc. Even if that can only be calculated for major players, such as Crawley, Chalder, Wez, White and Sharpie. Will need to wait a while to try and work out if any of...

Yea, well done! This whole IAG Cochrane non - review is a ridiculous emphasis on process over sense.

This manual produced by Maria Loades for the Bath Paediatric Service in August 2020 seems to tie in completely with PACE-based ideas of "treatment" for CFS. https://www.ruh.nhs.uk/patients/services/clinical_depts/paediatric_cfs_me/resources_for_professionals.asp?menu_id=1 See thread...

Well, this page is still up on the Bristol University site: http://www.bristol.ac.uk/academic-child-health/research/research/cfsme/lightning-process/ "Lightning Process This project seeks to define and describe the Lightning Process® (a commercially-available complementary intervention)...

Great news

It's a good article @Joan Crawford

Have just seen this good news, from a tweet I hear that @KaraJaneSings is on her way home today. Out of danger, out of hospital. She’s a marvel. Much love to her and her family

Something to raise when the PSP unanswered questions survey comes out in 2021.

This ties in with results from Synairgen, who developed Interferon-1B as a treatment for severe asthma and have done trials on its effect on Covid19. https://www.thelancet.com/journals/lanres/article/PIIS2213-2600(20)30511-7/fulltext Sir Stephen Holgate and others at Southapton have developed this.

Amy Small Retweeted Long Covid Wales @LongCovidWales · 14 Nov Replying to @LongCovidScot@lesleymacnivenand 2 others @vaughangething@WelshGovernment “You can't rehabilitate us if you don't know what's the matter with us! “ #DiagnosisB4Prognosis #LongCovid #CareforLongCovid

The funding by NIHR and MRC for the DecodeME study is a huge plus. They are beginning to consider the biomedical science behind it. Plus, there are many doctors/nurses/other healthcare workers developing Long Covid and appalled at the disbelief/gaslighting and psychologising that they are...