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Copied post this might be of interest from 2007 Assay: Measurement of Mitochondrial Function https://www.genengnews.com/magazine/80/assay-measurement-of-mitochondrial-function/

The paper comparing results in female CF And ME/CFS patients is posted later on the thread here and had its own thread that is now closed and the discussions merged Comparing Idiopathic Chronic Fatigue and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Males: Response to Two-Day...

yes but most of it is on 'old' data not new 'research' so it could continue ad infinitum, particularly in the case of PACE trial data that still isn't available even though the MRC said it would be back in 2018 https://www.s4me.info/threads/more-pace-trial-data-released.9401/page-6#post-167893

if you go to 'search forum' and select 'search tags' then enter 'muirhead' you should find most of them here. eta: the ME show podcast interview (with Gary Burgess) is a good one for 'patient experience'. https://www.s4me.info/threads/the-me-show-series-two.7873/page-4#post-152104

@Hilda Bastian just wondering if you considered asking Dr Nina Muirhead?

precisely. Similar scenario in IAPT re 'recovery' (as pointed out by Scott on cbtwatch) why don't they just ask the patients directly.

"This publication is provided for historical reference only and the information may be out of date." Introduction The AHRQ evidence report on the Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome was published in December, 2014 and provided a literature review for...

https://www.s4me.info/threads/adverse-outcomes-in-trials-of-graded-exercise-therapy-for-adult-patients-with-chronic-fatigue-syndrome-2021-white-etherington.20767/#post-347678

Loretta was on local BBC news last night. They covered the same info from the article above including:

so no delay? in 2007 guidelines: "characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days)" https://www.nice.org.uk/guidance/cg53/chapter/1-Guidance

they appear to equate PEM with boom and bust: https://www.s4me.info/threads/patterns-of-daytime-physical-activity-in-patients-with-chronic-fatigue-syndrome-2020-chalder-sharpe-white-et-al.15313/#post-263730

it depends on their definition of postexertional malaise: PDW recently said: “It is also remarkable that the committee use the symptom of post-exertional fatigue as a reason for not providing GET"...

still no reply to this: https://me-pedia.org/wiki/Open_letter_to_the_Lancet

Donors help mum raise thousands for lifeline wheelchair https://www.gazette-news.co.uk/news/local/braintree/19345157.witham-mum-thanks-donors-raising-funds-lifeline-wheelchair/?ref=rss

:banghead: possibly the most frequently used emoji on the forum. The last response to one of these FOIs was that the data could not be supplied because Peter Denton White had retired and there was no one else at QMUL who could extract the data...... miraculously this data has been retrievable...

Tynwald Douglas IOM 19th May 2021 Motion to hear witnesses – General Debate on Myalgic Encephalomyelitis pdf: https://www.tynwald.org.im/business/hansard/20002020/t210519%20RHB.pdf

ironic as it was Robert Courtneys (a former member on this forum, sadly no longer alive) analysis/submissions that were key in this 'process' being instigated. eta: it has just occured to me that a lot of patient groups are represented here, so are they all classified as 'activists'?