Proposed Letter to NICE

Hi Arnie! Two reasons. The first is that I am a tired old man who is unable to retain a mixture of information and act on it. The other is that I am unable to retain a mixture of information and act on it because I am a tired old man.

If it's any consolation, that is only a copy of the letter. I have no idea why or how I typed out her name and added a link, but the original is a text-only file. I also ended up having to add names manually to both the copy here and my text-only version.

Thanks for reminding me.

 

There's now a reply here: https://www.s4me.info/threads/grahams-finalised-letter-to-nice-january-2018.1885/

I doesn't engage with what I thought were the most important parts of the letter (about the problems with the supposed evidence for the efficacy of CBT and GET), but I thought some of the responses were reasonable.

This part from the reply is not reassuring:

Anyone know what 'hosted' means? They Royal Colleges have a bad history with CFS.

The NGC's clinical director, Bernard Higgins, was also the "Guideline Lead" for these poor guidelines for 'suspected neurological conditions':

https://www.nice.org.uk/guidance/gid-cgwave0800/documents/draft-guideline

It looks like it could be a real struggle to get anything decent from the NICE review.

 

Honestly, doesn't sound very promising. Actually they're saying "We do as we want...ahem...as the rules say". Sad.

Nonetheless, million thanks to the authors of the letter and for being active!

 

Yes, they are based at RCP, confirmed by NICE people on our table. I do not think all NICE staff have the entrenched BPS view yet. So much depends on who the chair will be and who is pulling her or his strings. (At least they are not in the same building as the psychs!)

It is going to be a huge challenge to achieve a new Guideline, not dominated by the psychs.

If they lose ground on ME it helps to expose the sham that is their basis for "treating all YUMS (Yet to be Understood Medical Symptoms)" and their secondary strategy of "People with all long-term conditions will cost the NHS much less with an internet based course of CBT". (Suggestions for an acronym re the latter are welcome)

 

I'm intending to reply, so any thoughts or comments would be welcome. I need a good night's sleep first!

 

Well good luck with that!

 

Wow

I don't know the NICE system and their regulatories. But it could be a direction, to use their rules "against them".

 

Charles probably could not apply as a lay member given his qualifications. This is just my take (not researched)! He did ask the question re whether 'private' (ie not NHS) doctors could be considered. NICE guy said they were looking into that.

is Keith G well enough. NICE facilitator at our table did say that they were looking at more ways of involving ill people generally in their Guidelines, but no real details on that. Job-share anybody with a couple of back-ups.

 

I think it is also worth remembering there is still a long consultation period ahead, and I suspect that whatever other events transpire during that period will have a significant influence on those ongoing consultations. The more difficult it can be made for NICE to stay in their comfort zone the better; I also hope that very thought might help 'guide' those who determine the guideline committee. Basically means the ME/CFS community need to keep at it from all angles, and make it as hard as possible for NICE to maintain the status quo, and to be sure they know it.

 

I don't normally have much trouble sleeping now that I have found the trick that works for me: a couple of stronger co-codamols, an all-night electric blanket, a hot water bottle, thick pyjamas, thick socks, long johns. I actually manage to stay, well not warm, but the right side of cold, and sleep for a good 8 hours. Mind you, it only feels like I've had 4 or 5, but lots of you out there envy me that.

As Barry suggests, I want to keep the pressure on, not in an unpleasant way, but in a carefully reasoned way.

 

It is so difficult with all this NICE stuff.

I was so pleased with the mood of the meeting in January, where I felt patients were definitely being reassured about the handling of the new guideline.

Then I see a reply like that recent one, and I think that NICE are not giving us a consistent message. The written reply did not sound reassuring to me. It really just said, we have processes, we follow our processes. No effort was made to address any of the real concerns that had been raised.

Meh.

 

Yes to this.

 

Exactly so. Icily nice.

 

I think its very difficult for an official body to respond "favourably or unfavourably" to, "please make sure you do this and please make sure you don't that", requests in what is supposed to be an impartial process.

Even if they have woken up and smelt the coffee they would also not want to be accused of prejudiced in the process before formal evidence presentations are done.

The problem with that is it leaves us having no hint either way what they are going to do but that's just the nature of official processes.

Grahams correspondence does however leave a public record trail that they have been given information about the obvious bias and that people are watching closely and any potential whitewash will be recorded.

I'm afraid though that they are just not going to write back and say, "hey Graham, ye we know the score don't worry we will nail those psych buggers", even if they have woken up to whats going on and that's what they intend to do.

 

Dr Weir would be fantastic, as would Nigel Speight. Dr Weir is private though and they are both probably far too busy defending patients across the country.

These are two of very few real ME specialists, could anyone suggest any more?

 

My overall feeling is that I need to reply along the lines of - you followed your normal procedures when choosing the committee to set up the guidelines, and when deciding whether the guidelines needed revision. In the first situation, the evidence for CBT and GET was subjective and weak, and the objective evidence indicated that they were ineffective. In the second situation, the evidence from PACE clearly showed that the subjective improvements were transitory, and the objective evidence emphasized that CBT and GET offered no real improvement. In both situations, a large number of patients were expressing real concern over harm caused by these, especially by GET. Yet your procedures managed to produce committees that were unable to grasp those truths.

It's fine to say that we must move ahead and use the evidence to produce appropriate guidelines, but if we do not have the assurance that NICE has learned lessons from the way that these committees were staffed, then we can't have any confidence in the process.

I'm tempted to say that it's rather like picking a group of Seventh Day Adventists to evaluate fossils found in different layers in the Grand Canyon.

 

I'm not sure if Professor Brostoff is still interested in ME issues but he could be another possibility maybe?