ME Association Statement: Forward-ME meeting and the NICE Guideline on ME/CFS

[Firestormm]

10 July 2014
Forward-ME meeting and the NICE Guideline on ME/CFS

“So we are stuck with a NICE guideline on ME/CFS that patients do not want, the ME Association regards as completely unfit for purpose, and a guideline which NICE (at long last) now accepts is no longer doing the job it should.”

Dr Charles Shepherd, medical adviser, The ME Association.​

Minutes of the Forward-ME Group meeting held on 25 June 2014: www.forward-me.org.uk/25th June 2014.htm

2.4 In summary, Professor Baker said:

He sympathised with the position we were in with the Guideline

The Guideline failed to address the real issues in ME/CFS

It does not promote innovation

It had a disappointing impact on specialist care and commissioning issues.

Comment from Dr Charles Shepherd, ME Association:

This was an extremely informative meeting with Professor Mark Baker from the National Institute for Health and Clinical Excellence (NICE) – he is their Director of the Centre for Clinical Practice.

As can be seen from the Minutes, Professor Baker accepts that the NICE guideline on ME/CFS is no longer meeting the needs of people with ME/CFS and it fails to take proper account of the wide variety of clinical presentations and disease pathways that come under the ME/CFS umbrella.

Neither did he seek to defend the NICE position of recommending CBT and GET to everyone with mild or moderate ME/CFS when he dealt with my written question on this particular aspect.

Unfortunately, NICE no longer decides which guidelines they are going to tackle afresh. This decision is now made by NHS England – who do not list ME/CFS in their topic selection ‘Library’.

And NICE have a full workload from the NHS England topic Library going up to 2017.

So we are stuck with a NICE guideline on ME/CFS that patients do not want, the MEA regards as completely unfit for purpose, and a guideline which NICE (at long last) now accepts is no longer doing the job it should.

Forward ME Group members agreed that the position is completely unacceptable – so a meeting with NHS England is our next priority.

Written question submitted to Professor Baker prior to the meeting:

“Given the fact that ME/CFS covers a wide variety of clinical presentations and disease pathways, and that patient evidence consistently indicates that the majority of people find that CBT is ineffective; around 50% report that GET makes their condition worse; and over 90% find that pacing is the safest and most effective form of management, why does NICE continue to recommend the use of CBT and GET for everyone with mild to moderate ME/CFS?

“And why does the NICE guideline fail to provide any information or guidance on the management of a number of very disabling symptoms and problems associated with autonomic nervous system dysfunction – neurally mediated hypotension and POTS (postural orthostatic tachycardia syndrome) in particular?

“This evidence, along with other evidence submitted during the recent consultation process on the proposal to place the NICE guideline on ME/CFS in the new static list, indicate that there is a need to review and revise a NICE guideline that was signed off nearly seven years ago.”

Dr Charles Shepherd
Hon Medical Adviser, ME Association
​

 

[charles shepherd]

http://www.thejournal.co.uk/news/health/acclaimed-county-durham-doctor-banned-7387569

 

[charles shepherd]

http://www.thejournal.co.uk/news/health/acclaimed-county-durham-doctor-banned-7387569

Prof Mark Baker, Director for the Centre for Clinical Practice at NICE, said: “We are unable to comment on this individual but when the NICE guidance on chronic fatigue syndrome was developed in 2007, there was not enough clinical evidence to suggest that prescribing supplements such as vitamin B12 should be recommended.

“However, NICE did acknowledge that some people have reported finding supplements helpful as part of a self-management strategy for their symptoms.

“If a person uses supplements and believes they are helpful to their condition and they don’t interfere with the clinical management of their condition, then NICE does not object to their use.”

 

[Sasha]

“If a person uses supplements and believes they are helpful to their condition and they don’t interfere with the clinical management of their condition, then NICE does not object to their use.”

@charles shepherd - is this as weird as it sounds? That NICE is doing me the tremendous charming favour of not minding what supplements I personally use? What possible business of NICE could it be what supplements I choose to use?

 

[Valentijn]

Prof Mark Baker, Director for the Centre for Clinical Practice at NICE, said: “We are unable to comment on this individual but when the NICE guidance on chronic fatigue syndrome was developed in 2007, there was not enough clinical evidence to suggest that prescribing supplements such as vitamin B12 should be recommended.

“However, NICE did acknowledge that some people have reported finding supplements helpful as part of a self-management strategy for their symptoms.

“If a person uses supplements and believes they are helpful to their condition and they don’t interfere with the clinical management of their condition, then NICE does not object to their use.”

So basically doctors should not test for B12 levels (according to NICE's "Do Not Do" list for ME/CFS) or prescribe B12. But B12 can be medically helpful, in which case patients should pay for it themselves and use it without the help or guidance of a doctor.

And they wonder why ME/CFS patients end up trying so many random things on their own

 

[Firestormm]

I wonder if the comments and Dr Shepherd's note about this B12 stuff shouldn't be on the related thread and not here? Only a suggestion but it might take away from the importance of what Baker was saying about the actual Guideline? Dunno.

 

[taniaaust1]

Unfortunately, NICE no longer decides which guidelines they are going to tackle afresh. This decision is now made by NHS England – who do not list ME/CFS in their topic selection ‘Library’.
And NICE have a full workload from the NHS England topic Library going up to 2017.

umm that is quite convenient for them isnt it.

 

[heapsreal]

Are they going to ban all supplements from shopping centres too because that would be self medicated and encouraging false illness beliefs. While they are at it ban fruit and vegetables.

It won't happen as the shopping Centre chains have more power than the government.

 

[Sean]

So we are stuck with a NICE guideline on ME/CFS that patients do not want, the MEA regards as completely unfit for purpose, and a guideline which NICE (at long last) now accepts is no longer doing the job it should.

Forward ME Group members agreed that the position is completely unacceptable – so a meeting with NHS England is our next priority.

I can feel a round of bolshieness coming on.

Might be time for patients to start actively, and very publicly, flatly refusing to be used for dodgy research.

Just say no.

What have we got to lose?

 

[ukxmrv]

I wonder what implications this admission will have on the Judicial Review that failed in the High Court. Thinking along the lines that making this admission now may contradict their bullish attitude and comments at that time.

 

[Esther12]

Hmmm...

Not sure if someone being somewhat open about the problems here is a good sign, or just reflects the fact that he knows that acknowledging these problems doesn't really help us, and saves him the trouble of having to go on the record defending the indefensible.

It's a bit worrying that my first response was to be pretty pleased when someone with power said: 'Things suck and there's nothing you can do about it.'

 

[user9876]

Hmmm...

Not sure if someone being somewhat open about the problems here is a good sign, or just reflects the fact that he knows that acknowledging these problems doesn't really help us, and saves him the trouble of having to go on the record defending the indefensible.

It's a bit worrying that my first response was to be pretty pleased when someone with power said: 'Things suck and there's nothing you can do about it.'

I see it as positive that they are acknowledging issues it suggests that the psych community is perhaps losing its blanket hold. Although I wonder if they will now start privately lobbying him.