Initial impressions & thoughts:
Page 9, 1.2.5
Do not delay making a provisional diagnosis of ME/CFS.
Very important. The sooner a patient can start managing their activity profile appropriately, the greater their chances of a better long-term outcome (though not necessarily a full recovery, of course).
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"The committee reinforced there is no therapy based on physical activity or exercise that is effective as a treatment or cure for ME/CFS."
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the impact of symptoms on psychosocial wellbeing
Finally, they get the causal direction right. Only took them 30 years. But they got there.
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Recognise that the following are not necessarily a sign of abuse or neglect in children and young people with confirmed or suspected ME/CFS:
- physical symptoms that do not fit a commonly recognised illness pattern
- more than 1 child or family member having ME/CFS
- disagreeing with, declining or withdrawing from any part of their
management plan, either by the child or young person or by their
parents or carers on their behalf
- parents or carers acting as an advocate and communicating on behalf
of the child or young person
- reduced or non-attendance at school.
A well deserved slap in the face for Crawley & co.
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Page 18, 1.8.3
Be aware that people with ME/CFS are unlikely to be seen at their worst...
Page 20, 1.8.11
For people with moderate ME/CFS or severe or very severe ME/CFS, consider providing or recommending aids and adaptations (such as a wheelchair, blue badge or stairlift) that could help them maintain their independence and improve their quality of life, taking into account the risks and benefits. Include these in the person’s management plan.
Page 21, 1.9.1
Advise people with ME/CFS that:
• there may be times when they are unable to continue with work or education
• some people find that going back to work, school or college worsens their symptoms
Very important.
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Still too much of the
management plan speak, and assumptions about establishing baselines and stabilising symptoms and progressing from there etc, in there for my liking.
Page 29, 1.11.22
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Advise people with ME/CFS after a flare that the time it takes to return to the level of physical activity they had before the flare varies from person to person.
Also need to advise patients that it is possible to push too hard and end up permanently worse off, and that it is very easy for that to happen.
The section on physical activity needs special attention and close analysis. (Page 27, 1.11.15-22)
Same for the section on CBT. (Page 32, 1.11.43-50)
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Only up to 1.13, and that will have to do for me for today. So maybe there is something on this further on in the document, but...
I think there needs to be explicit recognition of and discussion about how relevant 'professional advice' is to long-termers, most of whom have figured out the (more ME-specific) practical management stuff a long time ago, and do not need another round of 'expert knows best' dumped on them.
Particularly in light of the fact that at this stage that even most of the best pros* still don't know much about it or how to manage it, and are taking their clinical management clues almost entirely from patients, especially long-termers.
*With some exceptions, of course, like Charles Shepherd and Lenny Jason.
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Maybe I've just been burnt too many times, but I'm drawn to staying cautious about things.
Me too. It needs to be gone over with a fine tooth comb before it can be endorsed.
But it looks pretty good so far. A huge step forward.
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A huge thanks to the patient advocates on the review committee. I have no doubt it was at times a frustrating and draining experience, maybe even a bit disheartening.
You done good.
