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Health: Chronic Fatigue Syndrome

Volume 814: debated on Tuesday 12 October 2021


Asked by

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.

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.

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?

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.

My Lords, I welcome my noble friend to the Dispatch Box as a Minister for the Department of Health and Social Care and Minister for Life Sciences. It is, without doubt, the best job in government, and I know that he will acquit himself extremely well.

We are making huge progress on the syndrome called “long Covid”, and I note the encouraging progress that NICE is making on guidance for post-Covid syndrome. But does the Minister accept that this shines a clear spotlight on how far behind and wrongheaded we are with the diagnosis and management of ME and CFS? In particular, does he accept that, in the interests of health equality and national productivity, we need to rethink the way that people are got back on their feet after they have been hit by these horrible viruses?

I thank my noble friend—my predecessor—for his warm words and his offer of advice to me, as I find my feet and find myself swimming at the deep end, if you like, in this job. Usually, when I get a question like this, I say, “I will ask my predecessor” but clearly, he has a question for me.

My noble friend is absolutely right that we have to be concerned about how we help those who are suffering from ME and chronic fatigue syndrome, but he will recognise that there is a range of views on this issue. If we want these guidelines to be widely accepted and respected, it is important that we get as many stakeholders around the table as possible. NICE has agreed to this round table; hopefully, we can then move forward.

My Lords, I too welcome the Minister to his post. I declare that I have been vice chair of the NICE committee that produced the revised guidelines on ME/CFS over the past three years, through consensus agreement in the committee. This was fully compliant with NICE’s rigorous processes. Will the Government work with commissioners to ensure that appropriate specialist services for patients with ME are developed and continue, and that services monitor accounts of harms as well as benefits?

I thank the noble Baroness for her warm welcome. I am new to this and, as you can imagine, I am still learning the ropes and learning about NICE and its processes. However, I agree with the noble Baroness: it is really important that we address the issues she raises and if she writes to me, I will ask for some advice and respond to her.

Does the Minister agree that patient groups and charities are key in providing support to these patients? They are very concerned about the absence of guidelines, particularly as they have been involved in their production. Could the Minister offer them any reassurance about the timing of the guidelines?

I understand that NICE wants to publish these guidelines as quickly as possible. It is very aware that there have been two delays: first, to make sure that it took on board the various comments; and secondly, the current delay because of issues raised by some clinician groups. As noble Lords will understand, NICE is independent from the Government. It hopes to progress this issue by having the roundtable, hearing all the different views and seeing if some consensus can be reached before the guidelines are published.

Does the Minister accept that the prevailing view in some quarters that ME is a psychological disease is causing untold harm, including to children and young people, who are being forced to accept treatments which are damaging to them, and to their parents, who are sometimes accused of abuse? Taking time to achieve consensus is one thing, but the Minister should be aware that there is a huge cost to this.

It is always important to recognise the unintended consequences and the costs of any delay. I can understand the frustration of many who have ME/CFS at the delay to the publication of the guidelines. It is important that we try to get as much consensus as possible. If noble Lords feel that there are further delays, I hope they will write to and put pressure on me and wider stakeholders, so that we can put pressure on NICE, but it is important that we try to achieve as much consensus as possible.

My Lords, what issues were raised during the pre-publication period for the final guidelines which merited a pause in publication?

I thank the noble Baroness for her question. The issues related to some of the guidelines concerning GET. There was a concern that these would be deleted. Some groups and stakeholders expressed the concern that, while some patients clearly found these damaging, others might find them helpful, or partly helpful—not as a cure in themselves but as part of their treatment. That is why NICE convened this roundtable to ensure that it hears a wide range of views. Hopefully, this can achieve some sort of consensus and help stakeholders to understand where others are coming from, so that some sort of agreement can be reached.

Those who have had the opportunity—and, indeed, the fortitude—to read the report First Do No Harm have been struck by the treatment of women, who have suffered greatly at the hands of a minority of members of the medical profession. Today, we have another example. Patients have been dismissed, ignored and not believed, and the majority of them are women. Can my noble friend give an assurance that women will be listened to and not treated in the way that many of us, men and women, have found appalling?

I thank my noble friend for her question and for making time to meet with me in the early days of my job and give me the benefit of her experience, particularly on the issues she covered in the Cumberlege review. It is absolutely right that we praise our health service when it does well, but we should also be able to acknowledge when mistakes are made or when patients do not receive the kind of service we expect them to. It is important that my noble friend and others push me, as the Minister, and the Department of Health and Social Care to make sure that we are addressing the genuine needs of patients and that patients are not ignored. I pledge that I will be a champion of patients.