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Another great letter. For info, NICE finally added a warning to the current Guidelines around !0/11 Dec 2020, following much communication from charities etc https://www.nice.org.uk/guidance/CG53 "This guideline covers diagnosing and managing chronic fatigue syndrome (CFS) which is also known...

It's all babble to me, but I am concerned that Trish G decided to endorse it with her "signature".

For people who have no idea what ME is like, (for example most doctors and healthcare workers) how would you express it briefly? You could use: words/phrases, maybe a word cloud. quotes or facts drawings/pictures The space is small and rectangular. All ideas and links are welcome. You do...

Thanks again @Caroline Struthers

Do we know what group it would be in?

My notes on some of this: Clare Gerada got Covid in early March, her worst symptom was severe muscle pain. As she began to feel better she started running again, which was the worst thing she could possibly have done. Then got herself a personal tariner and took 3-4 months of gradually incresing...

My daughter developed ME after viral labyrinthitis. The initial infection was not too bad, she was nauseous and a bit unsteady walking, but was able to attend a few lessons and study at home. She was 16 and just starting A-levels. The specific balance/nausea symptoms resolved by the end of...

The authors seem to happily recommend low dose hydrocortisone or Ritalin "A double-blind, randomised, placebo-controlled crossover study of 60 CFS patients evaluated treatment with methylphenidate (10 mg twice daily) compared with placebo and reported clinical improvement in 17% of patients.7"...

The consultation period has now ended (22 Dec) and the Committee are now finalising the Guideline, presumably in response to the comments. I realise the process may well have been ongoing when you submitted the piece. Date for release of GDL is 21 April.

Your trip 15 years ago sounds fascinating @Peter Trewhitt. Sorry your health has declined so much.

Wow, great that this doctor has written about this.

So, this PHQ basically asks "Are you bothered?" or rather "Over the last week have you been bothered by x" There are then 3 options: Not at all Bothered a little Bothered a lot It sounds to me more like a Catherine Tate sketch than serious research. The 15 Qs are on: stomach pain, back...

Great news and good timing. 9-11 April 2021. 10 days before the Final Version of the new NICE GDL are produced. Also a good lead in to ME Awareness, #MM and DecodeME

Great article @Caroline Struthers

I guess it will be a chance for someone to record what she says!

In the video he talks about doing a larger trial to see if improvement in wellbeing is sustained for a longer period alongside reduced healthcare use/costs. They are now recruiting in 3 areas: Sheffield, Tyneside and Manchester/Lancashire

The DWP had not contacted my friend's GP prior to her assessment.

"Fatigue was assessed using the validated Chalder Fatigue Scale (CFQ-11) (35, 36). Participants are asked to answer these questions with reference to the past month in comparison to their pre-COVID-19 baseline, with responses measured on a Likert scale (0-3). From this a global score can be...

Inflammation of the dorsal root ganglia have been found in autopsies of people with ME. "Fibromyalgia is clearly a stress-related disorder. Psychological distress, physical trauma, and/or autoimmune illnesses are frequent fibromyalgia drivers. Dorsal root ganglia (DRG) have unique anatomical...

I think it could be months before wider Pfizer availability in UK and infection is spreading fast.