Thank you, Charles, for saying that the UK ME/CFS charities need to be, and are listening to what their members are saying. Also for starting this thread which I think has pulled out lots of useful points among PR members. Thanks everyone.
Trouble is they keep going round and round in my head so I thought it might be useful to try and summarise the major themes that I think have come out and here’s my understanding:
We’re concerned, by statements from the MRC and the PACE investigators themselves, amongst many other independent authorities, that the scientific evidence base underpinning the NICE recommended treatments of CBT and GET, was and remains insufficient, to support these treatments being used in a clinical setting.
We’re concerned that important information, as objectively evidenced in the IOM Report about the diagnosis of the disease, its biological basis, its principal symptom (all strongly indicating that the NICE recommended first treatments of choice are contra indicated) is not reflected in the current guidelines.
We’re concerned that the absence of the information in the IOM Report in the NICE Guidelines deprives health care providers in the UK of up to date relevant information on the diagnosis and treatment of ME and is a barrier to patients being able to make an informed choice about what happens to their own bodies.
We’d like to see a return to symptomatic relief and pacing as a first line treatment option, and honesty with patients when they don’t have anything to offer.
We think we should keep up the pressure on NICE to publicly engage with our concerns, recognising that organisational and individual advocacy both have important roles.
And as Jonathon Edwards said in respect of our collective advocacy efforts:
“we have an independent opinion from the Information Officer that the claim the criticism is unreasonable and malicious is nonsense.”
Hope this is a reasonable stab at summarising the major themes; at least it’s what I’ve got from this thread so far. Apologies in advance if I’ve missed things or got some of it wrong.
Trouble is they keep going round and round in my head so I thought it might be useful to try and summarise the major themes that I think have come out and here’s my understanding:
We’re concerned, by statements from the MRC and the PACE investigators themselves, amongst many other independent authorities, that the scientific evidence base underpinning the NICE recommended treatments of CBT and GET, was and remains insufficient, to support these treatments being used in a clinical setting.
We’re concerned that important information, as objectively evidenced in the IOM Report about the diagnosis of the disease, its biological basis, its principal symptom (all strongly indicating that the NICE recommended first treatments of choice are contra indicated) is not reflected in the current guidelines.
We’re concerned that the absence of the information in the IOM Report in the NICE Guidelines deprives health care providers in the UK of up to date relevant information on the diagnosis and treatment of ME and is a barrier to patients being able to make an informed choice about what happens to their own bodies.
We’d like to see a return to symptomatic relief and pacing as a first line treatment option, and honesty with patients when they don’t have anything to offer.
We think we should keep up the pressure on NICE to publicly engage with our concerns, recognising that organisational and individual advocacy both have important roles.
And as Jonathon Edwards said in respect of our collective advocacy efforts:
“we have an independent opinion from the Information Officer that the claim the criticism is unreasonable and malicious is nonsense.”
Hope this is a reasonable stab at summarising the major themes; at least it’s what I’ve got from this thread so far. Apologies in advance if I’ve missed things or got some of it wrong.
