@tomkindlon I disagree with pts. 2 & 5. Having #SevereME I do very much #suffer with/from #MyalgicEncephalomyeltis. #NICE use the term ‘mild’ however infuriating - using different terminology is not necessarily helpful. In this case ref. to #NG206 / #NICE classification &/or the caveat re 50% loss of function ought to be included in articles.

@tomkindlon I have shared your post, Tom, as I agree that we need to share, collate & analyse the treatment experiences of #pwME. However, given that these posts can be read in isolation, I must add the caveat that #NICE via #NG206 advises that no treatment can cure #MyalgicEncephalomyelitis only d/w symptoms.

Letter to social-worker on #communication, 4,800 words. Areas included:

relevant illnesses & disabilities;

energy-limiting chronic illness #ELCI ;

speech issues;

listening & hearing issues;

vision issues;

reading issues;

writing issues;

cognitive issues;

sensation-overload issues;

social contact issues;

#NICE guidance #NG206;

conclusions.

Housemate looking for SW’s email. Then I can send if off! It has taken me four weeks to draft up…

#pwME #SevereME #MyalgicEncephalomyelitis

Linking the alleged #NICE fallacies in re #NG206 by inter alia the UK #PyschoCabal to #LogicalFallacies is hysterical… 😂

Link to article by @b_m_hughes on #TheScienceBit website:

https://thesciencebit.net/2023/01/10/eight-or-more-logical-fallacies-in-that-paper-bemoaning-the-new-nice-guideline-for-me-cfs/?s=09&amp

@FrooView
Housemate is finally en route home (now 23.23) and will give me a meal idc, more than 26 hours since my last.

With #SevereME one is supposed to eat & drink small quantities and often.

Per #NICE guideline #NG206 1.12.21:

“Encourage people with #MECFS who have nausea to keep up adequate fluid intake and advise them to try to eat regularly, taking small amounts often. Explain that not eating or drinking may increase their nausea.”

4/4 #VerySevereME

“Very severe ME/CFS

People with very severe #MECFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.”

Link to #NICE website & #NG206
https://www.nice.org.uk/guidance/ng206/chapter/Recommendations

3/4 #SevereME

People with severe #MECFS are unable to do any activity for themselves or can carry out minimal daily tasks only… They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.

Link to #NICE & #NG206
https://www.nice.org.uk/guidance/ng206/chapter/Recommendations

2/4 #ModerateME

Moderate ME/CFS
People with moderate #MECFS have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work or education, and need rest periods, often resting in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.

Link to #NICE & #NG206
https://www.nice.org.uk/guidance/ng206/chapter/Recommendations

1/4 #MildME

“Mild ME/CFS
People with mild #MECFS care for themselves and do some light domestic tasks (sometimes needing support) but may have difficulties with mobility. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often have reduced hours, take days off and use the weekend to cope with the rest of the week.”

Link to official #NICE website & #NG206:

https://www.nice.org.uk/guidance/ng206/chapter/Recommendations