From The MEA’s September Newsletter

I know we have been talking about the new clinical guideline on ME/CFS for some time now, but it is important. A good guideline means we can improve health and social care and gain greater recognition for this often devastating condition.

I don’t think anyone expected publication to be delayed at the last minute or for some of the Royal Colleges to be able to convince NICE that their opinions on graded exercise and cognitive behavioural therapy had not been taken into account. But that’s what happened and it caught us all by surprise.

On 17 August, hours before final publication was expected, NICE announced it was delaying the release of the new guideline.

Stakeholders have now been invited to attend a roundtable discussion with NICE and the Royal Colleges (who are also stakeholders) to try and understand what has happened and how we can move past this latest hurdle.

The guideline review process has been thorough and followed established protocols including a detailed review of research evidence. The guideline committee reached consensus and NICE accepted the recommendations before releasing what we assumed was the final draft for stakeholder comment on 04 August.

NICE has since considered this feedback and amended the guideline – and we should see what it looks like very soon.

The roundtable meeting will take place at NICE in London. Invitations have now been received but we don’t know which stakeholders have received them. 

It would be infeasible to include over 220 stakeholders in a meeting of this kind, but there are clearly issues relating to transparency and to this breach in the publication process, so some stakeholders will feel aggrieved and be left out of these discussions. 

Other stakeholders representing patient groups are considering legal action, but we feel it is too soon for that and we want to hear what is said at this meeting and see if NICE will waver in its commitment to the final version of the guideline.

We have been invited to attend the meeting along with Forward-ME and, we presume, some of the other main charities. Only one representative from each can be present, and, as this has only just happened, we are considering our options.

When we know the outcome from this meeting we will review our position and let you know more as soon as any confidentiality restrictions are lifted.

In the meantime we stand firmly behind the call for the final guideline to be published without further amendment or delay.

This was Dr Shepherd’s (Hon. Medical Adviser to the ME Association) initial reaction to the news:

“We should have been welcoming the arrival of a completely new NICE guideline on ME/CFS today. A guideline that acknowledged ME/CFS as a serious and complex medical condition. In fact, we had sent an embargoed press release and statement from Forward-ME to all the news-media in anticipation of its publication.

“It was a guideline that contained sensible advice on activity, energy, and symptom management – along with a revised timeline and advice for early and accurate diagnosis, and it placed special emphasis on the care and management of children and young people and those who have severe or very severe ME/CFS.

“Instead, we are discussing the huge disappointment felt by the patient community to yesterday’s announcement from NICE to pause proceedings while discussions take place around objections to the new recommendations regarding CBT and GET – objections that were discussed and resolved as part of the long review process…” 

Visit the NICE Guideline website page to see the complete story and view all the news-media reports.Vote in the website survey: Have the Royal Colleges behaved responsibly in obstructing publication and implementation of the new NICE guideline on ME/CFS?

Thank you for continuing to support the ME Association. We couldn’t do what we do without you.

Russell Fleming

Communications Manager MEA
Carol Monaghan hits out over delay to guidance for ME diagnosis and management

SNP MP Carol Monaghan has slammed the National Institute for Health Care Excellence (NICE) for delaying its promised guideline on the diagnosis and management of Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS).

Monaghan, who is chair of the all-party parliamentary group on ME/CFS, said that people with the disease are dismayed that the publication of the new NICE guideline has been delayed without sufficient prior warning.
 APPG on ME wrote a letter to NICE on Thursday 26th August at 5pm. Thank you to everyone who wrote to their MPs asking them to support the letterNICE Announces Next Steps for ME/CFS Guideline – A roundtable discussion

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