It’s ME Awareness Week 2021 (#MEAW21) and we’re talking about health and social care for people with ME/CFS (#NHS4MECFS).
With the August publication of a new NICE clinical guideline and the possibility that it will provide better support for people with the condition, we asked for feedback about health and social care so we might all consider how things are now and what can be done to bring about positive change.
We do tend to hear more bad experiences about secondary care and referrals to ME/CFS specialist services than we do good, but there are some examples of good practice that we would like to see taken on board by all secondary care providers.
It is not surprising that we hear so many bad experiences given the current, outdated guideline, the inappropriate recommendation for graded exercise (below), a lack of individualised treatment options, a continuing lack of medical knowledge, and seeming failure to listen to and take into account what people with ME/CFS have to say.
But there is no excuse for ignorance and a good standard of care and support should be offered to anyone with suspected symptoms or a diagnosis of ME/CFS. The new NICE guideline has indicated that many existing ME/CFS specialist services and other secondary care providers will have to learn new ways of working with people who have this medical condition.
- Forward-ME & Oxford Brookes University Report on GET & CBT Patient Survey (2019)
- Parliamentary Briefing Document for House of Commons Debate on ME/CFS (2019)
- The ME Association Report, ‘No decision about me, without me’ (2015)
In this blog, we have included a selection of comments that relate to secondary care and exercise. The new draft of the NICE clinical guideline (2020/21) has removed graded exercise therapy as a recommendation after many years of protest from the patient community and a review of clinical trial evidence.
Secondary Care Referrals and Exercise
1. “I went to the GP as I was struggling with pain levels. The pain I was most concerned about was around my heart/left lung area. She told me she couldn’t do anything to help me, and when I burst into tears she said she would refer me to the pain clinic. A month later I got a telephone appointment and all they could offer me was GET. Their suggestion was building myself up on their treadmill. But I refused and that was the end of that!”
2. “I have huge issues with my lymphatic system and swelling and have regular massage and gentle prescribed exercise to assist with this. When it didn’t seem to be having any effect, my doctor recommended jumping on a trampoline!!”
3. ”I was discharged from the ME/CFS specialist service because I could not progress with their exercise targets. When I was assessed it was decided that I would try to increase my walking ability. I asked what I I should do if I could not manage to exercise, and was told to push through any pain, as, ‘those CFS symptoms aren’t real, are they?’!”
We want to publish a report of the recent health and social care experiences from people with ME/CFS.
- we are looking for good and bad experiences as they relate to primary and secondary healthcare (GPs, diagnosis, referrals, ME/CFS specialist services, management, etc.), and,
- experiences of social care provision (accessibility, local authorities, care need assessments, paid carers etc.).
- We also want to hear from people who have not been in touch with health or social care because previous experiences have made them decide to opt-out.
- And we want to learn about the kind of changes you think need to be made that will improve the way in which people with ME/CFS are treated by the NHS and social care services.
Please join this week’s discussions on MEA social media, or you can write to us via email: Feedback@meassociation.org.uk Try and limit your emails to 200 words per story if at all possible. We can’t reply to every email we receive, but we do promise to read them all.
4. “My daughter was 13 when she got ME. She was pushed into GET by a paediatrician who promised it was a safe cure. She became worse in both physical symptoms and mood. Then she tried to kill herself, twice.
“She identified GET as the main cause of her suicide attempts, but yet it was still pushed. At every appointment was pushed. We tried to distance ourselves from the harmful paediatrician, but are now on child protection, for refusing GET and educating her at home.”
5. “My last appointment with my GP and he recommended GET when my fatigue was getting bad. This was this year. I had to remind him the NICE guideline was changing.”
Help Raise Awareness
We have produced an MEAW21 Media Toolkit that contains posters and graphics you are free to use during ME Awareness Week and beyond.
We’ll also update it with all the blogs and other information we will be sharing from Monday 10 – Sunday 16 May.
New Website Poll
Consider the last time you had any contact with the NHS about ME/CFS. How would you rate this experience?
6. “The last specialist I saw was a neurologist in the autonomic department of the National Hospital of Neurology and Neurosurgery. I’d been referred for POTS testing and this was my follow up appointment.
“She blamed my symptoms and the exercise test results on deconditioning and wouldn’t listen when I said I wasn’t deconditioned, and that my symptoms were improving despite resting more.
“She talked about exercise as a treatment, and when I said that it is harmful for ME patients and tried to explain the studies that had been done, and about the PACE trial being debunked, she just snapped “it’s a debate” before changing the subject.
“I left that appointment feeling invalidated and gaslit and like I’d wasted my time going for testing, which was itself traumatic for me. I even questioned whether I was really ill and whether I should start pushing myself again.
“I later received a letter from my GP asking me to come in to discuss the exercise treatment, but I decided to ignore it as I was worried about having another confrontation.
“I took the ignore-it-and-hope-it-goes-away approach. I was worried it would be brought up in future appointments but fortunately it hasn’t, and hopefully it has been forgotten about.”
Russell Fleming, Content Manager, ME Association