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In November, as part of the UK Malnutrition Awareness Week, Helen Baxter of The 25% ME Group gave a presentation at the Malnutrition Taskforce Learning Event on how dietitians and the wider MDT can help people with ME. You can watch the presentation on YouTube, and a transcript is available...

It is 2 years since the new NICE guidelines, and Epsom and St Helier's ME Service has not been updated. Information sheets include the following:

Thank you. I'll look into it.

There is now a Twitter account for the End Malnutrition in ME campaign supported by The 25% ME Group. If you are on Twitter, please follow @MalnutritionME https://twitter.com/MalnutritionME If there is anything you think should be posted, please let me know. Today we posted the following in...

Many thanks JemPD.

Page 12 of the APPG report Rethinking ME states: Is this true? If so, to what degree? And over what period? I'd be grateful if anyone could let me have the evidence. There is no citation for this statement in the report. A previous sentence within the paragraph (stating that recovery is...

I wonder if a letter to the BMJ might be in order. This could point out: · There is a lack of research into gastrointestinal symptoms in ME. · There is a lack of clinical investigation into gastrointestinal symptoms in ME patients. · There is a lack of knowledge among...

IMO there are three approaches. 1. Increase awareness among healthcare workers that problems with eating and digestion are a consequence of ME. 2. Highlight the requirement to provide nutrition (whatever the cause of malnutrition) because it is a human right. 3. Call for research into the...

I don't have any particular scientist in mind, but (to answer a different question) in my fantasy Institute of ME Research I would have the following research groups: Cardiovascular physiology Cell signalling Drug development and repurposing Energy Metabolism Epidemiology Gastroenterology...

Caderousse's wife La Carconte in The Count of Monte Cristo, possibly. She is pale, thin and sickly, and spends most of her time in her room either stretched out in an armchair or leaning against her bed. (Leaning against?? That sounds painful - possibly a translation issue)

It is a very good question and worthy of a research proposal, IMO. I do remember this being discussed years ago on another forum, but I can't remember much about it. I have not found any research into associations between tonsillectomy and ME or long COVID, however associations have been found...

The Son by Jo Nesbo has a minor character who has ME. He is a drug addict staying in a hostel, spending most of his time in bed with the curtains closed, using all his energy to get drugs. It mentions that he received a lot of diagnoses before ME. I'm reading the book at the moment...

Thanks for posting. These bolus doses (a large single dose) don't work, and are potentially harmful, because they induce inactivation of vitamin D.

Last week I had midazolam and fentanyl for a procedure. It was not a general anaesthetic but conscious sedation and local anaesthetic. I had no problems with at all. I was weak and tired the next couple of days, but that would have been expected even without the drugs and I was completely back...

Best wishes to you.

It is clear that they will continue to do their best to thwart any progress.

Javid's statement is very encouraging. I feel real hope in my heart that things will change, the healthcare system will understand our needs as patients, and the MRC will fund some serious medical research at last (just like I did in 2002 when Liam Donaldson said we had been in the wilderness...

"Historically defined as GI conditions with no organic basis, FGIDs are now believed to arise from neurogastroenterolog- ical disturbances and alterations in gut-brain communication" This sentence in their introduction implies they have already moved on from believing "functional" has no...

I was thinking in terms of wasting and weight loss, which could - and should - be prevented if appropriate nutritional support is provided by dieticians, but your post really raises the question of at what point does malnutrition begin? My impression is that all patients with severe ME are at...

I would like to see a campaign to end malnutrition in patients with severe ME. For this purpose, I am currently gathering information so I can produce a briefing document. I would be grateful if anyone can share any information with me including academic articles, statistics, surveys, media...