End Malnutrition in ME

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 reports, personal experience, or what you would like to see happen.
Any personal information will of course be treated as confidential and no personal information or quotes will be used without gaining express permission first.

I have the following so far:
Baxter H, Speight N, Weir W. Life-threatening malnutrition in very severe ME/CFS. Healthcare (Basel) 2021 Apr 14;9(4):459 doi: 10.3390/healthcare9040459
Saunders J, Smith T Malnutrition: causes and consequences. Clin Med (Lond). 2010 Dec;10(6):624-7. doi:10.7861/clinmedicine.10-6-624
Montoya JG, Dowell TG, Mooney AE, Dimmock ME, Chu L. Caring for the patients with severe or very severe myalgic encephalomyelitis/chronic fatigue syndrome. Healthcare (Basel) 2021 doi:10.33390/healthcare9100331.
NICE guidance for ME/CFS NG206
NICE Quality standard for Nutrition support in adults QS24

 

I am very interested in this but the title says to end malnutrition in ME and the intro is to end it in severe ME. They are likely different issues. I am currently moderate and heading for moderate/mild. If malnutrition is taken as vitamin and mineral deficiencies and not necessarily as wasting and underweight, I think we all should be getting a complete nutritional profile with the aim of getting all to optimal levels on the NHS so I have taken the definition slightly further to deficient meaning not optimal for those ill. The cost of this privately is hundreds or thousands of pounds.

I've mostly been of the belief that all was well nutritionally with me. I ate a healthy, balanced diet. Gluten and dairy free helped a great deal too. It's more expensive to be gf.

However seeing that finally getting my vit D levels to optimal did make a difference using high doses has piqued my interest in vitamin therapy. Then I had improvements when using a product called Halo - pink lemonade. Even though I bought it as an electrolyte, looking, I see it has 1200mg of Vit C in too. 75 minerals in must also help.

I've also benefitted by having a product called Huel when needed. A nutritionally complete meal in a bottle. I think all of this should be available to those with ME on low income and would much better serve than CBT.

I am low in ferritin. I have not supplemented with iron yet as I still don't quite understand if your iron levels are ok what is going on with low feritin. Makes me wonder what else I might be low in and what improvements in health could be achieved and why deficient at all since I eat fairly well.

 

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 risk of malnutrition and should be given support, but perhaps all patients with ME are at risk. If so, is it a question of severity or, as you say, different issues? It is certainly something that needs further research.
Thanks for your comment, I'll take it into account and give it some further thought.

 

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 support of the NHS 75th anniversary:
https://twitter.com/user/status/1676548240274063365
https://twitter.com/user/status/1676585576105902080
https://twitter.com/user/status/1676606325009129472

 

Thank you. I'll look into it.