Snowdrop
Senior Member (Voting Rights)
I've decided I'm not done with this particular article by Anna Chellamutha.
I'd like to clarify further a comment from my previous post in case anyone new (without any background to understand certain statements made by AC) comes to this thread after the fact.
The piece has been taken down and that is certainly an appropriate decision (even if couched in 'we stand by debate' waffling).
To quote the relevant bit from AC's article:
To quote a part of my post (#883) my post:
I'm not sure this is clear for any lay person. I could be wrong but here's the clarification.
8 years ago in Cornwall (2016) the NICE guidelines would have been clearly recommending CBT/GET not pacing and energy management. It is beyond unlikely that Cornwall would be offering what she is suggesting. Or people who have been opposing this treatment would have been flocking to this service when the NICE recommended service failed them. This never happened and I'm sure there are people from the Cornwall area who can verify this.
The NICE guidelines recommending pacing and energy management (as the regulars here well know) is the brand new guidelines (2021) that have been fought for by many PwME including people here.
This statement by AC alone is quite suspect and makes me question the whole. Along with the statement:
The panel did indeed include ME/cfs researchers. The committee in fact included people with a clear BPS CBT/GET point of view.
Here are the MEpedia entries for some of the committee:
https://me-pedia.org/wiki/Gabrielle_Murphy
https://me-pedia.org/wiki/Jo_Daniels
https://me-pedia.org/wiki/Alan_Stanton
https://me-pedia.org/wiki/Joanne_Bond-Kendall
There are more and if anyone really wants to they can easily search further to verify the MEpedia information.
It seems to me that Euan Lawson likely did not have any idea of the level of misinformation that exists in this area of ME health info. Hopefully this has been a learning curve that has helped to bring some light to the subject of how disingenuous these BPS / lightning process people have been.
See this document for a list of the committee:
I'd like to clarify further a comment from my previous post in case anyone new (without any background to understand certain statements made by AC) comes to this thread after the fact.
The piece has been taken down and that is certainly an appropriate decision (even if couched in 'we stand by debate' waffling).
To quote the relevant bit from AC's article:
and:8 years ago our 7 ½-year-old daughter was diagnosed with ME/CFS. I knew all too well how little the NHS had to offer. However, we followed the advice of the local CFS service, practised ‘energy management’, ‘pacing’ and watched our previously full of life daughter become essentially bed/sofa bound.
Ihave never (not knowingly anyway) disregarded a NICE recommendation before now.
To quote a part of my post (#883) my post:
And how is it that 8 years ago in Cornwall the (cfs) ME service was recommending pacing and energy management which would have been against the guideline of the time?
I'm not sure this is clear for any lay person. I could be wrong but here's the clarification.
8 years ago in Cornwall (2016) the NICE guidelines would have been clearly recommending CBT/GET not pacing and energy management. It is beyond unlikely that Cornwall would be offering what she is suggesting. Or people who have been opposing this treatment would have been flocking to this service when the NICE recommended service failed them. This never happened and I'm sure there are people from the Cornwall area who can verify this.
The NICE guidelines recommending pacing and energy management (as the regulars here well know) is the brand new guidelines (2021) that have been fought for by many PwME including people here.
This statement by AC alone is quite suspect and makes me question the whole. Along with the statement:
This may not have been helped by the panel’s membership, which lacked any ME/CFS researchers or anyone who had recovered from the illness, and included lay members who were recruited from organisations with documented anti-recovery and anti-Lightning Process bias.11
The panel did indeed include ME/cfs researchers. The committee in fact included people with a clear BPS CBT/GET point of view.
Here are the MEpedia entries for some of the committee:
https://me-pedia.org/wiki/Gabrielle_Murphy
https://me-pedia.org/wiki/Jo_Daniels
https://me-pedia.org/wiki/Alan_Stanton
https://me-pedia.org/wiki/Joanne_Bond-Kendall
There are more and if anyone really wants to they can easily search further to verify the MEpedia information.
It seems to me that Euan Lawson likely did not have any idea of the level of misinformation that exists in this area of ME health info. Hopefully this has been a learning curve that has helped to bring some light to the subject of how disingenuous these BPS / lightning process people have been.
See this document for a list of the committee: