Breaking news! ME Association has heard back from NICE about the guideline review… and it’s not good news | 05 July 2017

July 5, 2017



The ME Association has heard back from NICE about the guideline review… and the news is not good.

Buried in the letter to stakeholders that was sent out in December 2016 was a rather worrying statement:

“There will be a 2-week consultation with registered stakeholders if information summarised indicates that a ‘no update' decision should be considered.”  

“There is no consultation if the decision is to update the guideline because it has been based on the availability of new evidence, and is usually supported by stakeholders.” 

We wrote to NICE to ask them for clarification as to whether the triggering of a stakeholder consultation, that will commence on 10th July, basically means that the group who have been reviewing the evidence have decided that a formal and full review of the NICE guideline on ME/CFS is not now required.

This position has been confirmed by NICE this morning. 

The exchange of correspondence between the ME Association and NICE is set out below.

This is obviously going to come as very disappointing news to the ME/CFS patient community and we will now be doing all we can to try and persuade NICE to overrule the ‘no update' necessary advice they are being given.

This means that NICE needs to take serious note of:

1.  the extensive and consistent patient evidence on the ineffectiveness of CBT and the harmful effects of GET

2.  the criticism of the PACE trial that has come from both the ME patient community and from clinicians and researchers

3.  the re-analysis of the PACE trial data on recovery

4.  the evidence that the MEA has already submitted when NICE was placing the ME/CFS guideline onto their ‘static list'. This evidence covers a number other important areas of the NICE guideline where we believe that the guideline is not fit for purpose and needs to be properly revised

We will also be meeting with other ME/CFS charities and the Countess of Mar for a Forward ME Group meeting at the House of Lords next week where the NICE guideline review will be on the agenda

Dr Charles Shepherd
Hon Medical Adviser, ME Association


Exchange of correspondence between MEA and NICE:

05 July 2017
Dear Dr Shepherd
This is correct, information summarised indicates that a ‘no update' decision should be considered but please note this does not constitute NICE's formal decision on this guideline. The decision is provisional and may change after consultation.
Best wishes
Michelle
Michelle Whittaker
Administrator Surveillance Reviews
NICE Centre for Guidelines
National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BT | United Kingdom
Tel: xxxx
www.nice.org.uk


04 July 2017
Dear Michelle,
When you wrote to stakeholders on 6 December 2016 it was stated that:
There will be a 2-week consultation with registered stakeholders if information summarised indicates that a ‘no update' decision should be considered.
There is no consultation if the decision is to update the guideline because it has been based on the availability of new evidence, and is usually supported by stakeholders.
Please could you therefore confirm that I am correct in concluding that the decision to now hold a two week stakeholder consultation period means that the group who have been reviewing the evidence have concluded that there is no reason to formally review the NICE guideline on ME/CFS.
Regards
Dr Charles Shepherd
Hon Medical Adviser, ME Association.


22 June 2016
Dear Colleagues,
I am writing to advise you that NICE will shortly commence a 2-week consultation with registered stakeholders about the need to update NICE clinical guideline CG53 Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management.
The consultation will be open from Monday, 10 July 2017 until Friday, 21 July 2017. We will contact you again when the consultation has been opened so please look out for the email and the relevant documents.
If you have any queries please do not hesitate to contact me.
Kind regards.
Michelle
Michelle Whittaker
Administrator Surveillance Reviews

6 thoughts on “Breaking news! ME Association has heard back from NICE about the guideline review… and it’s not good news | 05 July 2017”

  1. Please provide a petition or somesuch we can all sign if NICE decides no update is needed. Our voices must be heard somehow–even if they choose to stick their fingers in their ears.

  2. Or perhaps we should start the petition now before it’s too late? One petition, which all the ME charities can get behind, would be best, as it avoids us ‘splitting the vote’, as it were.

  3. It is clear that Wessely & co (& Holgate) are already exerting their power, and that the situation concerning the review is predetermined. They are simply making strategic moves to assure themselves of getting the outcome they have already decided.
    We need to find out who the people are in these positions–the ones who are in the structure, and what the structure is. Finding out who they are will already inform us. We need to go further up the organisational structure as well, so as to identify the power relations and who is pulling the strings. Then the least we can do is make it clear that we know exacltly what is going on–that any consultation is a sham, just going through the motions to get the pre-set outcome.
    Reading through the report which justified no change before, the strategy was to say that the only kind of ‘scientific evidence that counted was that from ‘random controlled trials’…all medical research was dismissed on the basis of having too small samples, and being ‘laboratory studies’. (Apparently proper research is done in cow-sheds, not laboratories (sorry)).
    This enabled them to dismiss all the medical research out of hand.
    Also every bit of evidence from advocacy groups was dismissed out of hand.
    It looks set to be more of the same. But at least we can find out who the individuals are behind this (I suspect there will be no surprises….psychiatrists, no medical researchers).
    Then we should write to them simply stating that we can predict exactly what they will do, and that it is clearly an exercise in sticking to a predetermined outcome, not a genuine consultation–a sham. But at least we can blow their cover.
    So how do we find out the organisational structure, who is involved, and who is pulling their strings…I haven’t been able to, but there are advocates who will be better at this than I am.

    (I’ve been busy writing about the MUS rubbish
    http://www.positivehealth.com/article/cfs-me/medically-unexplained-symptoms-diverting-5-year-funding-from-mental-health
    but it seems we need to get onto this now, quickly.).

  4. NICE totally ignore all/any physiological abnormalities in people with ME/CFS….but then again maybe we need to highlight them?

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