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 Health Care Professionals
I count myself as one of the lucky ones as my M.E. is generally mild, and I can still hold down a job. When my M.E. is bad, I come home around 6 pm and sit or lie on the sofa and do not move, except for a trip to the bathroom. I eat my dinner sat on the couch. I then go to bed about 10 pm. I sleep and get up as late as possible, 8 am – and go to work. This cycle can continue for weeks on end.
The only way I can do this is because of the nature of my work year – my Christmas break is a reprieve from the work of the first semester, I rest and I then push through to Easter, which gives me a short respite to claw over to the end of grading. I then have 3 months (still working) but with a pace where I can try and recover. Then it starts all over again…
I was first suspected of having M.E. aged 17 in 2002, after a urinary tract infection and virus. Eventually the tests were saying I was clear but I was still exhausted all the time and unable to concentrate at college, with poor memory, and a fuzzy brain. I was doing my A-levels at the time.
I finally saw a consultant a year later around July time. He said I probably had M.E. but as I seemed to be getting better, not to worry about it. I thought, great! Who wouldn't be thrilled to hear that you've probably had something but you're all fine now? I went off to university in September 2003 and spent just shy of a decade thinking there was just something wrong or flawed with me. “why can't I seem to do all the things my friends do?”, “Maybe I am lazy?”, “It must be me”, “This is just the way I am”. I had no idea I was still living with the effects of M.E.
In November 2011 I caught a virus and went downhill even after the virus was cleared up. I couldn't stand bright light, I had cramps and pains through my body, I struggled to find words, sometimes saying the wrong word entirely and not realising. There was a brain fog and exhausting tiredness. I kept going back to my doctor. “All your tests are fine,” she said.
I think the only reason she listened was because she said, “You don't seem like you're depressed”. it makes me wonder what would have happened if I had been feeling that way – which, wouldn't have been surprising given my many symptoms. Eventually, it was my mum who said, “I think this sounds like M.E.”. (She had since been diagnosed with it herself). I went back to my GP and pleaded and was finally referred to the Chronic Pain Clinic.
6 months later, December 2012, I got my referral. Whilst waiting for that appointment, my health had got worse and I was feeling really down. I was put on their group programme for 3 months. I stuck to their rules, even after the programme finished. It took 2 years to go from working 12 hours a week to being able to manage a full-time job. Yes, I am one of the lucky ones.
There are times now when I can get out to see friends, read books and watch films, and I've recently started swimming again… but I'm always waiting for the relapse hiding round the corner… sometimes it comes back for a few days or weeks, other times months.
Since finishing the recovery programme in 2013 none of the 3 GP surgeries I have been with have asked to review it, to update my records or see how I am doing. Every time we have moved house I'd assumed they'd want to do a check-up. It has never happened. I don't have the energy to chase those kinds of things. I've let a lot of stuff like that go because I need to decide where to spend my energy and resources.
I was told I didn't qualify to get early access to the Covid vaccine so I patiently waited until May for my first dose with healthy adults my age. I wouldn't call having M.E. healthy! The last 18 months felt like a sentence as I did my best to protect myself. I was more scared of what might happen AFTER I got covid, than if I got it, knowing it could be several years minimum of pain and exhaustion because of relapse.
Seeing what's happened with Long Covid has been awful. It is also frustrating watching the scientific effort now to find a cure when M.E. has been ignored for so long…