Health: Chronic Fatigue Syndrome

Baroness Thornton Excerpts

Tuesday 12th October 2021 Lords Chamber

Asked by

[Baroness Thornton]

To ask Her Majesty’s Government, further to the decision to delay the planned new guidelines on the diagnosis and management of ME/CFS, what assessment they have made of the ability of the National Institute for Health and Care Excellence to carry out its functions; and when they expect such guidance to be published.

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Kamall) (Con)]

NICE is seen as a world leader in the translation of research into authoritative, evidence-based clinical guidelines, and the Government have confidence in NICE’s ability to carry out its functions effectively. We all know that ME/CFS is a complex condition and, as we understand, a range of views about its management have been expressed during the development of the updated guidelines. To address as wide a range of views as possible, NICE is holding a round table with stakeholders next Monday to discuss these issues and will then take a decision on the next steps.

[Baroness Thornton (Lab)]

First, of course, I welcome the Minister to his place and his job. There is nothing like hitting the ground running, since he has got to do three Questions in a row—that does not often happen. My Question was prompted by two important issues. First, public confidence in NICE’s methodology, and indeed NICE’s own confidence in its methodology, are vital. If the Minister says that the Government have confidence in NICE, it begs the question why the Government are not demanding that the ME/CFS guidance, three years in the writing and with patient support, is not being published immediately.

Secondly, I will quote from one of the many emails that I have had about this issue: “Thank you in advance for speaking up for ME patients. No treatment is better than harmful treatment. My daughter is now bedbound with severe ME due to GET”. GET is the current medical treatment regime for ME/CFS sufferers, which these guidelines say should be reformed. Did NICE come under pressure to pull these guidelines because of medical vested interests in the delivery of GET, particularly since they believe that this is the treatment for long Covid?

[Lord Kamall (Con)]

First, I thank the noble Baroness for her warm welcome. I look forward to many exchanges with her and to learning from Ministers across the House and those who have been in the Department of Health and Social Care before. I know that the noble Baroness is recognised as a champion of the 250,000 people who are living with ME/CFS. As the noble Baroness knows, there are a number of complex symptoms, and experts disagree over the multifaceted way to address this.

As the noble Baroness knows, the NICE guidelines were delayed twice. They were first delayed because it wanted to make sure that it had taken on board all the various submissions that had been made; they were delayed a second time because, just as they were about to be announced, concerns were raised by clinicians and other stakeholders. If you are going to have guidelines, it is important that they are accepted and recognised by as wide a range of stakeholders as possible; otherwise, they might lose their authority.

We want to make sure that, whenever we have this situation and there are people with a range of views, we get them around a table and have a conversation, as common sense tells us, to see if we can agree on a way forward. I very much hope that, once we have had this round table, we will be able to agree a way forward.