NICE ME/CFS guideline publication delay drags on…


Another delay in the revision process to the ME/CFS guideline was announced on 10th September:

Updated: 10th September, to change the month of the meeting from September to October.

A NICE spokesperson said: “In order for the meeting to be as effective as possible it is important to fully understand the issue and concerns that all groups attending the meeting wish to raise. We also recognise the difficulty that holding the meeting at short notice created for some attendees who would have been unable to make the original date.”

As of the 16th September there has still been no public announcement of the date and list of attendees. Some stakeholder groups have admitted to being invited, but although WAMES received an acknowledgement to our email, we did not receive an invitation. Because we still have not been told the purpose and agenda for the meeting we cannot tell what the impact will be of excluding the Welsh patient community from the table.

What do we think we know?

@NICE.comms on twitter are reported to have said that the date of 17th October has been set for the Roundtable, with Prof Dame Carol Black as the chair. Forward-ME and Science4ME are two of the groups who have been invited.

Journalist Tom Chivers at The Post says he was told by ‘two people with some knowledge of the internal workings of both NICE and the Royal Colleges’ that the issue is that:

‘NICE created a new definition of the disease when producing the new guidelines…  the new definition inevitably rendered all the evidence on GET low-quality.’

‘My understanding now is that the Royal Colleges were nervous that they were essentially being forbidden from offering GET, even though clinicians found that it was helpful for many patients.’

The sticking point would appear to be that patients without exercise intolerance and Post-Exertional Malaise (or Post-Exertional Symptom Exacerbation) are now excluded from the diagnosis of ME/CFS. Doctors, researchers and patient advocates in the global ME community will be well equipped to argue the necessity of keeping the two patient groups separate. Few would be upset to relinquish the term Chronic Fatigue Syndrome (CFS/ME) and hand it over to those patients it would describe better!

And what about the guideline?

Barrister with ME, Valerie Elliot Smith has leaked the ME/CFS guideline on her blog.  She believes:

‘There is a strong argument that this process is now not just “flawed” but has become “fatally flawed” ie. irretrievable. This has been brought about as a direct result of NICE’s extraordinary actions and its failure to provide adequate justification, explanation or information regarding its next steps.

It cannot now be argued that NICE is acting in good faith or with any degree of independence.’

She is concerned that the lengthy delay to revising and publishing the guideline has meant many more patients have been subjected to harm by allowing the current (2007) guideline to stand and that people need to know that there is evidence to explain why this is so.

Many in the ME community however would prefer that the guideline is published quickly, accepted, and more research urgently embarked upon to find diagnostic tests to distinguish patients with PEM and those without, so that it is clear which treatments suit which patients. We wait a bit longer to see if those invited to the Roundtable can persuade NICE or if we are plunged into a decade of legal wrangles!

In the meantime if you choose not to download the embargoed guideline, journalist Steve Topple has analysed the leaked final guideline and has listed the key differences to the draft.

What does the ME community say about the Roundtable Announcements?

See our collection of links

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