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updated on 22 Mar 2022 I haven't checked to see what might have changed. overall their main pages on ME/CFS (although it only has chronic fatigue syndrome in the heading) are not bad. https://www.verywellhealth.com/chronic-fatigue-syndrome-symptoms-716110

Merged thread - see also post #33 above. https://www.reed.co.uk/jobs/daphne-jackson-fellowship/51264608

"This is when nothing works. My brain stops working, my mouth stops working, I’ll be mid-sentence and not know where I’m going with it. I’ll be unable to get out of a chair to go to bed because I don’t have the energy to stand up. It’s like your legs are empty.” 'extreme tiredness'(?)

Living with Pain and Chronic Fatigue Syndrome/ME Service - Harrogate and District NHS Foundation Trust (hdft.nhs.uk)

This leaflet Clinical health psychology in the management of CFS/ME Cornwall and Isles of Scilly Chronic Fatigue Syndrome/ME Service (linked to on their website) revised 06/2020 Review due 06/2023 A4 leaflet (cornwall.nhs.uk) (this one also due for review 06/2023 A4 leaflet (cornwall.nhs.uk)

How will you be letting Cochrane know that all these people have signed since the letter has been sent?

how many LP practitioners does it take to change a lightbulb? Only one, but the lightbulb has to really want to change.

This is the major problem with the main NHS England site. Cambridge and Peterboroughs site is actually not bad, and much better than the main NHS site; https://www.cpft.nhs.uk/service-detail/service/myalgic-encephalomyelitis-me-chronic-fatigue-syndrome-cfs-70/ maybe if the charities could...

https://events.cochrane.org/colloquium-2023 https://events.cochrane.org/colloquium-2023/schedule some interesting workshops Details of the workshops can be found here (see link to pdf) Abstracts accepted for the 27th Cochrane Colloquium, London, UK. Cochrane Database of Systematic Reviews...

From their website The Science Behind The DNRS Program https://retrainingthebrain.com/understanding-the-science/ Brea: Chronic Inflammatory Response Syndrome, Mast Cell Activation Disorder, Myalgic Encephalomyelitis, FM...

The NHS service prioritisation is a mystery to me. I knew an elderly lady in her 90's who was fitted with a G-tube (due to swallowing problems) and provided with all the equipment and regular 'food' and replacement tube supplies etc for years at her home all for free and without any kind of proviso.

For me 'showering' is important for my well-being. I feel awful if I feel dirty or smelly. I like feeling clean. Rather than messing about with wet wipes etc I find it just as 'easy' to step into the bath, sit down, soap my bits and then rinse off with the hand held shower attachment. Quick dry...

Abstract There is a clear clinical overlap between fibromyalgia, myalgic encephalomyelitis, and post-COVID 19 condition. Chronic fatigue, cognitive impairment, and widespread pain characterize these 3 syndromes. A steady line of investigation posits fibromyalgia as stress-evoked...

6000 yay

ANZMES video Episode 6 Know ME - Respiratory and Complementary Medicine

Long Covid is a new name for an old syndrome https://www.statnews.com/2023/09/14/long-covid-me-cfs-myalgic-encephalomyelitis-chronic-fatigue/ I get the feeling that this is promoting a bps approach; ie rehab rather than finding a cure (?)

although not incorrect (as plural of stigma) maybe 'stigmas' would have been better choice given the other meaning of stigmata.

at end of the main paper it says: "Exercise had no beneficial effect on fatigue symptoms or quality of life in our study." ??

Physical exercise as a treatment for persisting symptoms post-COVID infection: review of ongoing studies and prospective randomized controlled training study Kogel et al Abstract Background and purpose No evidence-based treatment is available for patients with persisting symptoms post-COVID-19...

FDA rules TODAY that ingredient in Benadryl and Sudafed from pharmacy shelves don't work | Daily Mail Online