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NICE guideline on ME/CFS: FoI correspondence

JoanDublin

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
You can bet your bottom dollar that if we accept MEGA, come 2017 they will decide not to review the NICE guidelines because they will say 'let's wait and see what MEGA finds'. Bingo, we lose another generation. Time to stand up to this once and for all. After all, reading through all of this, we have actually nothing left to lose.
 
C

charles shepherd

Senior Member
Messages
2,239
JoanDublin said:
You can bet your bottom dollar that if we accept MEGA, come 2017 they will decide not to review the NICE guidelines because they will say 'let's wait and see what MEGA finds'. Bingo, we lose another generation. Time to stand up to this once and for all. After all, reading through all of this, we have actually nothing left to lose.
Click to expand...

The MEGA study won't have any effect on what NICE decides to do in relation to a possible review of the NICE guideline in 2017

NICE is primarily concerned with diagnosis and treatment/management and clinical trials relating to treatment

NICE have very little interest in new research studies that fall outside outside this area of their work
 
JoanDublin

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
charles shepherd said:
NICE have very little interest in new research studies that fall outside outside this area of their work
Click to expand...

It seems to me they have enough interest to decide there wasn't 'enough evidence' to review the guidelines at this stage. Let's hypothetically say that if the redacted expert adviser happened to be someone on the MEGA team, do you not think even for one little minute that they wouldn't be swayed by advice from that person when it comes time for review? I know how politics work and I know how influence works. It's about 10% on the record and through formal channels and 90% connections, biases, vested interests and money trails.
 
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ash0787

Senior Member
Messages
308
Does NICE have any oversight ? don't suppose we can just report them to their superior ?

I don't have much experience in campaigns against government branches, if they are detached from
the ruling political party though it could be quite difficult to pressure them, same situation with the BBC.
 
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