Countrygirl
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http://www.meassociation.org.uk/201...ne-review-and-its-not-good-news-05-july-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
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