"Lack of NHS treatment for ME/CFS, and an idea for commissioning"

About: East Coast Community Healthcare C.I.C NHS Norwich CCG

(as the patient),

I have had ME/CFS for almost 6 years. Currently there are no actual treatments offered for ME/CFS under the NHS in Norfolk and Suffolk. The NICE Guidelines list CBT and GET as treatments that the NHS can offer, but these are not offered by the Norfolk and Suffolk ME/CFS service.

There is also a lot of controversy about whether these treatments are affective or damaging, but even if I wanted to make an informed choice to try these treatments I could not, as they are not offered.

I am very thankful that an ME/CFS service exists in Norfolk, and the Specialist Physiotherapist that I have been allocated has been very understanding and helpful when it comes to empathising with me, and supporting me by communicating to my university and the Department for Work and Pensions about how ME/CFS affects me.

I would not want this taken away, and I am glad I have had access to this. However, I am still very unsatisfied by the fact that no actual, real treatment is offered.

I am given one 10 minute appointment about once every 4 months, in which I am given encouragement to keep pacing my activity (no actual physiotherapy is given by the Physiotherapist).

This is something, but it is nowhere near enough. I understand that there is a lack of research and approved treatments for ME/CFS, but I also know that there is new research being published all the time regarding the illness, and that there are reputable private clinics such as the Optimum Health Clinic in Harley Street that offer a thorough, integrative psycological and biomedical approach to treatment that has shown very high success rates in terms of patient recovery, is not expensive as Harley Street clinics go, and which does not have damaging side-effects associated with its approach, such as is the case with GET and other non-NHS treatments such as the Lightning Process.

The Optimum Health Clinic will be carrying out a randomised controlled trial with the University of Surrey over the next few years, to investigate the effectiveness of their approach.

I personally would really like the Norwich Clinical Commissioning Group to investigate the effectiveness and viability of this type of approach, and to seriously consider commissioning the clinic's services for NHS patients in Norwich.

I have only heard good things about the clinic's approach, which is tailored to individual patients and includes a combination of psychological and nutritional therapy designed in response to individual case history and biomedical test results. It seems to me to be a reputable, well thought-out, careful approach, unlike other 'alternative' approaches such as the Lightning Process which is not so careful and has been known to cause serious relapses in patients.

Currently, as the situation stands, I have had a debilitating illness for the last 6 years which leaves me functioning at less than 50% of a healthy person's functional ability. I am in the prime of my life, and there is no treatment available to me on the NHS.

Apart from the personal impact of having a serious illness starting in my 20's, the financial impact must be considered. I have cost the UEA a lot of money as they have had to extend my PHD studentship by three years due to my illness. I have cost Student Finance England thousands of pounds in disabled student equipment and support. I am costing the Department for Work and Pensions in Disability Benefits, Norfolk County Council subsidise my bus travel, and the local NHS spends time and money on me because I have to visit the GP regularly for support with the side-effects of ME/CFS such as lack of sleep, irritable bowel syndrome, and overactive bladder syndrome - all of which also cost the NHS money in subsidised prescriptions.

This is not counting the fact that I am barely active, economically speaking. I am a young, intelligent woman with lots of potential that I am not able to contribute to the local community because of my illness. I have a Master's degree with distinction and award for best overall academic achievement out of over 250 students, I have almost completed a PhD, I am bilingual, I can grow fruit and vegetables, I can play music - all of which are skills that I could be putting to use to enrich the local community.

I also have many professional skills as well as extensive experience in the area of social development. I am skilled at working with vulnerable young people, especially supporting young people experiencing mental health difficulties, homelesness, and care leavers as I have professional experience and training in this area.

These are just a few of the things that I have to offer the local community, that I am currently not offering due to being to unwell to do so. Currently my potential to contribute to the local community is being wasted. This also has an impact on my mental health, which means that I am likely to need to use NHS resources by accessing the Wellbeing Service again as I have done in the past. Surely it would make economic and social sense to use NHS funds to pay for the treatment I am requesting so that I can get well, finish my PhD, stop claiming disability benefits and allowances, stop using the Wellbeing Service, stop using so many GP appointments and subsidised prescriptions which treat the side-effects but not the cause of my illness, not be on the caseload of the ME/CFS Service for another 6 years, and use my potential to work in the area of social development in the local community. Of course I am talking about myself alone here, but I think this is a relevant question and needs to be taken seriously, as I do not believe the current approach of offering no treatment to ME/CFS patients is a) ethical or humane and b) economically cost effective. If reputable, effective treatment is out there, why is it not being commissioned?

Do you have a similar story to tell? Tell your story & make a difference ››


Response from Geraldine Adams, Patient Liaison Manager, East Coast Community Healthcare

Dear bmerry8

I am so sorry that we did not respond to you before now.

I would be most grateful if you would please contact me (the Patient Liaison Manager) direct on 01502 718666, when I will be pleased to provide additional information to you.

  • {{helpful}} of {{total()}} people think this response is helpful