The BBC Today programme interviewed Dr Alistair Miller and Sonia Chowdhury a steering group member of Forward-ME and CEO of Action for ME on the 18th August 2021. It was about the delay to the NICE guideline on ME/CFS. A transcript is shown below and the link has the interview on BBC iPlayer starting at 01:52:00 (7:52am)
For those unable to listen on BBC iPlayer a recording of the interview can be found here.
00:00:00 Sarah Smith, Radio 4 presenter
The release of new guidelines around therapies for people suffering from ME and chronic fatigue syndrome has been put on hold as NICE, the National Institute for Health and Care Excellence says it can't agree on a document that's supported by all. In fact, three members of the review panel have actually resigned and NICE say that they need some time to consider their next steps.
00:00:20 Sarah Smith, Radio 4 presenter
But I can talk now to doctor Alister Miller, consultant physician in infectious disease and internal medicine. Good morning.
00:00:27 Dr Alister Miller
00:00:28 Sarah Smith Radio 4 presenter
Do you understand what the controversy is about here and why NICE have been unable to agree these guidelines?
00:00:34 Dr Alister Miller, Consultant Physician in Infectious Disease and Internal Medicine
Yes, I think I do this long being the approach to CFS/ME has since 2007 guidelines been using cognitive behaviour therapy and graded exercise therapy as the therapeutic approach for this condition, and there have been certain members of the patient community and charities who are deeply opposed to that approach. But it has served us well for the last 20 years or more, even before 2007.
00:01:07 Dr Alister Miller, Consultant Physician in Infectious Disease and Internal Medicine
It is the approach that is used in all NHS CFS clinics and it, on my understanding is that NICE we're going to advise against it and have now changed that position, which is very good news for all of our patients although I realised that some of the charities and patient advocacy groups may be disappointed by the pause.
00:01:32 Sarah Smith, Radio 4 presenter
And we'll be talking to one of them in a moment. Graded exercise therapy is asking patients to take a little bit more exercise every day in order to try and build up their tolerance.CBT obviously people object to the idea that that suggests that the illness their suffering from is in their mind rather than a physical illness.
00:01:50 Dr Alister Miller, Consultant Physician in Infectious Disease and Internal Medicine
Sure, well I think there are two really important points there first.
00:01:53 Dr Alister Miller, Consultant Physician in Infectious Disease and Internal Medicine
First of all, graded exercise is as it says, it's graded. It is not telling patients just to go out and go to the gym and blast the condition out of their system. It's a properly regulated incremental increase in exercise, supervised by a trained physiotherapist or occupational therapist or other clinicians.
00:02:14 Dr Alister Miller, Consultant Physician in Infectious Disease and Internal Medicine
That's really important, and secondly, the business over CBT and I think that was the sort of lead point in the Guardian article today. The fact that most clinicians would support the use of CBT for CFS ME does not in any way imply that we feel it is a psychological illness.
00:02:36 Dr Alister Miller, Consultant Physician in Infectious Disease and Internal Medicine
The reality is that CBT helps symptoms. It helps symptoms in people with cancer. It helps symptoms in people with rheumatoid arthritis and CFS/ME is very much a symptomatic condition if you don't have the symptoms, you don't have the condition and if CBT can help the symptoms and there are lots of trials to show that it can, then it can obviously improve the situation. So, to take those two therapeutic options away, it would be an absolute disaster for our patients.
00:03:06 Sarah Smith, Radio 4 presenter
Doctor Alistair Miller, thank you very much for that. We can turn now to Sonia Chowdhury She is the chief executive of Action for ME, a charity for ME sufferers. Good morning.
00:03:16 Sarah Smith, Radio 4 presenter
Good morning, Doctor Miller was telling us that to take away these treatments, Graded Exercise Therapy and Cognitive Behavioural Therapy would be a disaster for patients.
00:03:27 Sonia Chowdhury, CEO Action for ME
Well, first of all, the guideline the embargoed copy was not actually taking CBT away, it was acknowledging that it wasn't curative and then it had a place in supporting people, live with the illness. It's not just the patients…
00:03:41 Sarah Smith, Radio 4 presenter
So, you support the use of CBT for ME, and chronic fatigue syndrome patients.
00:03:46 Sonia Chowdhury, CEO Action for ME
We support it for helping people to live with the illness and cope with the symptoms. It is not a curative treatment. It's not just patients and charities that are saying that we don't want it. The evidence shows it is not effective.
00:04:02 Sarah Smith, Radio 4 presenter
And so are you concerned that the guidelines that NICE were going to publish have been indefinitely as far as we know, paused for just now, because they can't agree on it. And that this means that there will not be a change in treatment for patients until they come up with new recommendations.
00:04:17 Sonia Chowdhury, CEO Action for ME
Absolutely we hear we frequently hear from children and adults who have been made worse by graded exercise therapy and but also those who have been able to better manage this life changing condition because their GP listened to them and worked with them to manage their symptoms through careful energy management, which is what the draft guideline recommends. We do not want people to continue suffering, and the guideline was produced on the back of evidence through an expert committee who worked for three years and responded to every single piece of consultation, including from the Royal Colleges. So, we just don't understand why that's being delayed now.
00:04:58 Sarah Smith, Radio 4 presenter
But are we any closer to anything that could come close to being a curative treatment as opposed to just trying to help manage people symptoms?
00:05:05 Sonia Chowdhury, CEO Action for ME
There is nothing at the moment in terms of a curative treatment. That's because of the woeful lack of investment in research over the many, many years. So, we're calling for more biomedical research so that eventually people with me can have the treatments they deserve.
00:05:24 Sarah Smith, Radio 4 presenter
Sonia Chowdhury, thank you very much for talking to us.