NICE GUIDELINE ON ME/CFS WILL BE UPDATED! (Sep 20th 2017)

[Cheshire]

This decision is a real blow in the face of the "experts" NICE consulted, who advised to leave the guidance as is.

(Reminder: thread about The NICE “Topic Expert” Reports: http://forums.phoenixrising.me/inde...nices-expert-reviewers-via-foi-request.54208/)

 

[Valentijn]

This decision is a real blow in the face of the "experts" NICE consulted, who advised to leave the guidance as is.

Hopefully they've realized that their experts were not qualified for the task, and will bring in better ones.

 

[Barry53]

Hopefully they've realized that their experts were not qualified for the task, and will bring in better ones.

i.e. Hopefully they've realized that their experts were not.

 

[snowathlete]

How we made the decision

• 
  
  
  • A hospital department supplied data that patient reported outcome measures completed by patients receiving >18 sessions of CBT and/or GET improved 60% on the SF-36 (a patient-reported general health outcomes scale).

https://www.nice.org.uk/guidance/cg...we-made-the-decision#how-we-made-the-decision

Anyone know if we have details of this data and which hospital it came from?

Is this 100% of patients that were followed up? Doubt it, bet LOADS dropped out so you don't get their negative feedback included.

How many patients actually worsened on the scale? If not zero then that suggests patients must be warned of potential harm.

As others have pointed out many times before these are subjective measures and there are lots of factors that influence how patients fill these out beyond how the treatment actually affected them.

How do we know these patients even have MECFS given the diagnostic problems NICE themselves highlight?

How long were patients followed up for? We know from studies, including PACE, that at long term follow up the supposed gains recorded by SF-36 evaporate.

 

[snowathlete]

I celebrate the decision to review and am very grateful for all the organisations who made this happen, but...

with the organisations representing Neurologists, Psychiatrists and Physicians all opposing update and clearly supporting the BPS model and GET/CBT, we are really up against it.

So who is actually going to do the review?

If it's the same people as before, change won't happen.

I think we need to write to NICE and suggest that anyone taking part in the review should be willing for that to be made public. This is a controversial disease, transparency is necessary. NICE did not feel they could release the names of the stakeholder experts recently, and although I expect that decision to still be challenged at ICO/Information tribunal (and I think it's still important that it is) making sure that those signing up at the start of the forthcoming review would avoid a similarly unsatisfactory occurrence a second time round.

 

[Valentijn]

looks to me like she wrote it herself.

Yes, I think some of the bigger organizations are being represented by a few people regarding their input, or even just one person. I'm curious as to what the rest of the members of those organizations think about the statements made on their behalf.

 

[snowathlete]

Royal College of Paediatrics and Child Health

Yes

We am aware there is new evidence regarding effective management for CFS/ME in young people which will be published very soon, and is highly likely to lead to a change in recommendations.

This is an important and but long document. Does it distinguish between adults and children. In children it is often called postviral fatigue and has a better prognosis.

Did the pediatricians ask the children to write this out or something?

 

[snowathlete]

Yes, I think some of the bigger organizations are being represented by a few people regarding their input, or even just one person. I'm curious as to what the rest of the members of those organizations think about the statements made on their behalf.

You got in there quick Val, I deleted my comment and wrote a new one along the same lines. Obviously there aren't that many pediatricians interested in CFS and she is by far the more prominent in the UK. Could have been someone else, but the first set of bad edits very much suggest that the person writing it, whoever it was, was giving their individual opinion, then went back and attempted to edit the language as it was supposed to be the opinion of the College not an individual. Thing is, as said, I doubt many are interested, so perhaps likely one person gets to say what they think on the Royal College of Paediatrics and Child Health's behalf.

I agree with you that it would be very interesting to hear what other professionals represented by these organizations make of the statements.

 

[Somer]

What are the implications of this bit for young people?..... Ta


Royal College of Paediatrics and Child Health

Yes

We am aware there is new evidence regarding effective management for CFS/ME in young people which will be published very soon, and is highly likely to lead to a change in recommendations.

This is an important and but long document. Does it distinguish between adults and children. In children it is often called postviral fatigue and has a better prognosis.

 

[Chrisb]

I forget now but was there not recently another document issued by a Bristol based NHS Trust using very similar language?

Edit I think it was to do with MUS.

 

[slysaint]

In children it is often called postviral fatigue

or CDF (chronic disabling fatigue) according to Crawley

 

[user9876]

Hopefully they've realized that their experts were not qualified for the task, and will bring in better ones.

They need to look at the official who recruited such a biased set of experts.

I would be concerned that the same people will be asked to write new guidelines.

 

[Large Donner]

We am aware there is new evidence regarding effective management for CFS/ME in young people which will be published very soon, and is highly likely to lead to a change in recommendations.

This is an important and but long document. Does it distinguish between adults and children. In children it is often called postviral fatigue and has a better prognosis.

That was written by an E-bot it has no empathy or conscience, but it does keep popping up at unwanted intervals asking, "can I help you with anything". It has no logic and is only programmed to give standard responses.

The E stands for Esther by the way.

 

[Sean]

Common misperceptions are that these are prescribed primarily to treat psychological issues or inactivity/avoidance of exercise.

"misperceptions"

So you didn't tell us for decades that our core problem was psychological and inactivity/avoidance of exercise, and base your failed 'therapies' on exactly that assertion?

 

[Skippa]

Hope they don't update it to recommend LP...

 

[Invisible Woman]

Hope they don't update it to recommend LP...

Frankly, I wouldn't put it past them.

 

[Wolfiness]

We need to thank NICE for this. We shouldn't have to, but I think it would help our image.

 

[Barry53]

I'm just laughing! It's so good to see this nonsense in the rear-view mirror. We are so used to seeing it as the signposts to how we as people with this disease are perceived and thus how we will (not) be treated that a change in that status quo brings on bouts of uncontrolled mirth . This hubris in the light of today's announcement will have me chuckling all day. They so thought they had it all sewn up did they? Huge thanks must go to all the stakeholders who made such credible witnesses to what is really happening in the world of this disease and which could only be ignored if one chose to strap on blinkers and adhere to Wessely's dictum of 'nothing to see here, move along now'. My guess would be that however much the bods at NICE might well have wanted to stroke the egos of their best mukkers, the weight of evidence made it untenable, and short of being seen for the biased and intransigent organisation we have experienced, whilst at the same time bringing disgrace on themselves as individual decision makers, they had only one route they could feasibly follow. To extend my driving allusion, and in concert with the observation that the MRC thankfully turned down EC's MEGA baby, it seems as though 'we' (as in 'those of us who believe in the real-deal-disease and what it really is and what it really needs') are in the driving seat now and have overtaken that old Bedford van with its tail-light knocked out and its bumper cobbled on with duct tape, spluttering smoke from its rusty bonnet and limping onto the hard shoulder. Never mind...there's always a platitude around the next corner. Maybe for them it's 'SMILE it might never happen'?

Pig-flying day!

It also make you realise that without modern day social media, this would simply not have happened. NICE and the BPS brigade would have still been able to cosy up to each other in their ivory towers, and not enough people would have been aware enough to make change happen.

Obviously we mustn't count our chickens before they are hatched - the only real success will be when the guidelines actually do change, and whether they are really any good. But hopefully the writing is on the wall now. If they do change as this indicates, then all sorts of other things might cascade on from it, such as DWP assessments etc. But one step at a time.

 

[Wonko]

We need to thank NICE for this. We shouldn't have to, but I think it would help our image.

IMO I would suggest a statement that we welcome it - I'm not sure thanking them is appropriate until we see what they come up with, and maybe, how they come up with it.

 

[Wolfiness]

Yes, "welcome" is better