Proposed Letter to NICE

I think a crucial point is for NICE to appreciate why assessment of objective outcomes is so vital, because I'm not sure they do. The whole thing has been driven all these years on the presumption ME/CFS is psychological, in which case subjective outcomes are the accepted order of the day; we all know the powerful forces still wanting to promote that. I fear NICE do not yet properly appreciate ME/CFS really is a physical condition, hence assessment has to be based on objective outcomes. For us it is obvious, but for NICE, having been marinaded in BSP 'stuff' all these years, it may actually be a mindset change they are still not onboard with, especially as the BSP brigade will still be filling their heads with the old psychobabble beliefs. If we cannot be sure NICE really understands this, then the rest will be even more of an uphill struggle.

 

As per usual, the snag is it needs to be someone who doesnt have to worry too much about a paymaster i.e. the NHS

 

No. I mean that people who work for the NHS may be afraid to rock the boat acting in our favour with NICE.

We've discussed on other threads that therapists at some CFS clinics are implementing their own version of NICE guidelines, for example non PACE - CBT. Or pacing and activity management under the banner of GET.

Presumably, at least some of these are doing this because they realized the guidelines per se were making patients worse. So they quietly stay under the radar, helping patients as best they can. The possibility being that if they speak out, they'll get into bother and/or be required to implement CBT and GET as per PACE.

These doctors and therapists might fear for their jobs/careers if they speak out.

 

On the basis that most big organisations are run from the bottom up, might it not be that they are just doing what they have always done, nobody has told them to do any different, and management has not a clue about what they are up to?

 

That is entirely possible.

What I'm trying to say,is that those providing that treatment (i.e. the non NICE guidelines) would make excellent witnesses regarding the dangers of PACE style CBT and GET. They have adapted their approach to what works best for the patient.
However, it might be career limiting for them to come forward and speak on our behalf.

The PACE style fans are unlikely to have any such worries.

It's just another way the cards are stacked against us.