The new NICE Clinical Guideline for ME/CFS will be published on 18 August and it has the potential to improve health and social care provision for people with this condition.
In recent months, we have focused on drawing attention to the issues that you feel are important and have been asking about your recent experiences, your needs, and how you think current services should be improved.
We also suggested writing anonymous open letters to the healthcare professionals you have met or to the NHS and social care services in general to highlight your main concerns.
If you’d like to take part and submit an open letter of your own, or have anything else you’d like to contribute on these subjects, then please email: Feedback@meassociation.org.uk
We will be using your feedback in a report on health and social care that will highlight good and bad experiences, your thoughts on service provision, and your suggestions on improving relations with the NHS and social care services.
Dear healthcare professionals
I tried for months to book an appointment with you my consultant. I am constantly told there's no one in the pain clinic and my emails go unanswered. No repose from the answering messages I left for you, and I am told you’re all working from home.
I looked on the internet and found you were offering a private clinic. My parents are so worried about my condition they booked an appointment. I see you within 48 hours, so I guess that money talks. But, what about those who don't have supportive parents or partners or can’t afford to pay your private fees?
Dear healthcare professionals
It's been 14 years this year since I first saw a healthcare professional for a bad cold which turned into a chest infection which turned into M.E.
I haven't seen my GP for 8 years. I just gave up in the end as it was pointless. I just went home to suffer alone with no medical care whatsoever.
I've lost my job, my hobbies, my friends, my independence. But looking back it could have been so different. All I have been offered are antidepressants and told to exercise.
I did attend the NHS Chronic Fatigue Service. Finally, some help at last I thought, but no just 8 weeks of a clinical psychologist and a physiotherapist.
The first piece of advice I was given was to build up exercise every few weeks. I thought great that's easy I was fit prior to the virus. I cycled, walked, had an active job and lifestyle but WOW was I wrong!
After trying graded exercise therapy (GET) for a week, I crashed and never returned to my previous level of fitness. But exercise was strangely still attractive to me after all there was the P.A.C.E. Trial and other healthcare professionals were saying exercise worked.
So, I bought an exercise bike, and figured that if my symptoms worsened at least I was at home. I tried exercise for roughly 3 years on and off convinced it would return me to normal but in the end I had to admit defeat as all it was doing was making me worse.
I can't understand why healthcare professionals keep on advocating exercise. I am not deconditioned. One day I could walk and cycle for miles the next day I couldn't.
Here are some of the things healthcare professionals have said to me over the years:
NHS General consultant: “We can't find anything wrong with you so you fall into the CFS/ME category.”
NHS Neurologist: “I and other physicians don't believe in CFS/ME.”
NHS GP: “People must recover from CFS/ME because I've had patients who I don't see me anymore.”
NHS GP: “I believe that you believe.”
NHS GP: “Graded exercise doesn't seem to be working for you, we will have to try CBT.”
On a final note, why do we have to be in the grip of psychologists when all they are doing is prolonging the agony and suffering of millions of people like me?