Initial Impressions of the Draft Nice Guideline

Thoughts From a Very Quick Reading

On the surface it feels refreshingly different, but there are huge concerns.
Without any clear definition of what NICE means by”ME/CFS”,the Guidance can only be generalised energy management, which is exactly what, on quick reading, it seems to be.
The Fatigue Centres, far from being dismantled, appear to have been accorded expert status, from an initial read. This is a huge concern.
Without defining what Severe and Very Severe ME actually are and not including a full symptom experience, we fear people will still not be understood and will still be at risk. If you do not acknowledge the real symptoms of the most ill, you are never going to get the Guideline right for them.
On first reading, the Guideline does not give us much confidence that it has any idea about Very Severe ME or how to approach someone, or what they need or how to provide it. How, for example, can people with Very Severe ME realistically do CBT with the level of Cognitive Dysfunction that is manifest in Very Severe ME, although NICE says it is a choice, choice is normally based on possibility!
GET and the Lightening Process not being recommended is a huge triumph for the ME community, however the underlying psychosocial influence still seems, to us, to be very strong.
No mention of paralysis. Neurological symptoms seem to have been diminished to eye issues.
In what seems to be a pro-opathy move, brain inflammation in ME has been played down.
Very, very concerned about who is going to do the “evidence-based” Training that is recommended, especially when they can’t even define what ME/CFS is. What evidence base have they got?
Can’t see any mention of Enterovirus or Polio, only virus.
Good to see Drug Sensitivity acknowledged - at last.
Very good to see Risk Assessment included!
It is all very well talking about “Energy Envelopes” when you have one, but not helpful when it comes to Very Severe ME.
We just don’t understand how these Guidelines could be made, when there is no agreement on what is being talked about or what Severe ME actually means. Maybe we missed it?
We need more time to consider it.


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