BBC Radio 4 programme ‘File on 4’ will be broadcast on Tuesday 27 June at 8pm – 8:40pm : Believe ME – My Child Has Chronic Fatigue Syndrome
Summary
Matthew Hill investigates claims that parents whose children suffer from Myalgic Encephalomyelitis, aka ME or chronic fatigue syndrome, have been falsely accused of child abuse.
Download after broadcast from iplayer
I have suffered with CFS/ ME since I was 14 years old after suffering from glandular fever. I am now 30 years old and still suffer, at my worst I can become completely paralyzed unable to talk or move. I have managed to get my GCSE’s, A Levels, BSc (Hons) Degree and a further Level 5 National Higher Diploma in 20 weeks. I have held down a very good job for the last 7 1/2 years. But still now I am having to make a huge change to my working environment because of my illness. I have also had to leave work early today because of my symptoms; problems with my speech and difficulty walking and siting at my chair. I am very good at fighting my illness and fighting the fatigue but still to this day I am still learning the power it holds over me. Whilst at university I lived day my day as I felt that I didn’t have many days left to live, but somehow I got through. I underwent treatment called ‘The Lightning Process’ which had a massive positive impact and gave me my life back. However this is not recognised by the NHS! I do not have any medical support today and I deal with my illness on my own with help and understanding from my family and friends. With my CFS/ ME I truly believe that I am producing too much adrenaline leaving me extremely fatigued which I struggle to get over, but by trying to stop the flow of adrenaline and increase the flow of endorphins I can try and keep on top of the illness. I just wish I could help other sufferers to gain more control over their illness the way I have managed to with the use of The Lightening Process.
Dr Charles Shepherd comments on the BBC ‘File on 4’ programme:
Having assisted Matthew Hill with background information on the history and causation of ME/CFS, and the controversies surrounding the PACE trial, I thought he did a really good job in explaining the complexities of the situation that faces far too many parents of children with ME/CFS who are not willing to comply with medical advice regarding the use of CBT and GET that they disagree with. As a result the parents can easily end up being threatened with completely unwarranted child protection proceedings.
To listen to the programme again >>
http://www.bbc.co.uk/programmes/b08vyly5
Three instant comments posted on an internet discussion forum:
Just listened to the radio 4 programme and sat here in tears. It’s so sad how misunderstood this illness is. I thought the tone was really good and sounded hopeful that PACE was on its knees and NICE may be revised. Well done to all involved.
Very moving. Pro and anti-PACE points of view were represented. But overall, the balance was towards anti. At some point, the mother of a young boy said that he improved thanks to CBT/GET. The journalist then said something like, maybe it could be the natural course of the illness, because children prognosis is better than adults.
I thought it was a fair, in-depth report. Nice work by the BBC reporter. (And the NHS looks bad by offering no reaction or comment.)
And here are three links to information that was referred to in the programme:
1 Internal correspondence (obtained using an FoI) between NHS England and NICE in relation to a revision of the NICE guideline on ME/CFS:
http://www.meassociation.org.uk/2016/10/nice-takes-a-dim-view-of-foreign-work-on-mecfs-robin-ellis-freedom-of-information-request-24-october-2016/
2 Minutes of the 2014 meeting at the House of Lords with Mrs Isabelle Trowler – who declined to appear on the programme:
http://www.forward-me.org.uk/10th%20June%202014.htm
3 Summary of the MEA report of patient evidence relating to CBT, GET and Pacing:
http://www.meassociation.org.uk/2015/05/23959/
Recommendation from the MEA that GET should be withdrawn by NICE as a recommended form of treatment for ME/CFS:
Graded Exercise Therapy (GET)
We conclude that GET should be withdrawn with immediate effect as a primary intervention for everyone with ME/CFS.
One of the main factors that led to patients reporting that GET was inappropriate was the very nature of GET itself, especially when it was used on the basis that there is no underlying physical cause for their symptoms, and that patients are basically ill because of inactivity and deconditioning.
A significant number of patients had been given advice on exercise and activity management that was judged harmful with symptoms having become worse or much worse and leading to relapse.
And it is worth noting that, despite current NICE recommendations, a significant number of severe-to-very severe patients were recommended GET by practitioners and/or had taken part in GET courses.
The other major factor contributing to poor outcomes was the incorrect belief held by some practitioners that ME/CFS is a psychological condition leading to erroneous advice that exercise could overcome the illness if only patients would ‘push through’ worsening symptoms.
We recognise that it is impossible for all treatments for a disease to be free from side-effects but, if GET was a licensed medication, we believe the number of people reporting significant adverse effects would lead to a review of its use by regulatory authorities.
As a physical exercise-based therapy, GET may be of benefit to a sub-group who come under the ME/CFS umbrella and are able to tolerate regular and progressive increases in some form of aerobic activity, irrespective of their symptoms. However, identifying a patient who could come within that sub-group is problematic and is not possible at present.
Some patients indicated that they had been on a course which had a gentle approach of graded activity rather than a more robust and structured approach of graded physical exercise. There were some reports that patients were told they should not exercise when they felt too unwell to do so. These led, for some, to an improvement in symptoms or to symptoms remaining unaffected.
However, we conclude that GET, as it is currently being delivered, cannot be regarded as a safe and effective form of treatment for the majority of people with ME/CFS. The fact that many people, including those who consider themselves severely affected, are being referred to specialist services for an intervention that makes them either worse or much worse is clearly unacceptable and in many cases dangerous.
GET should therefore be withdrawn by NICE and from NHS specialist services as a ‘one size fits all’ recommended treatment with immediate effect for everyone who has a diagnosis of ME/CFS. This advice should remain until there are reliable methods for determining which people who come under the ME/CFS umbrella are likely to find that GET is a safe and effective form of management.
Dr Charles Shepherd
Hon Medical Adviser, MEA
June 27th 2017