Against the background of a new NICE Clinical Guideline for ME/CFS (18 August 2021), which has the potential to improve healthcare provision for people with this condition, we have been focusing on health and social care and asking about your recent experiences, what it is you want from the NHS and social care services, and how you think current services should be improved.
During ME Awareness Week when such topics were discussed at some length, we asked if you’d like to write an anonymous open letter to the healthcare professionals you have met. We have had a good response to this request and will feature a selection of letters over the coming week.
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 for improving relations with primary and secondary care.
Dear healthcare professionals…
Lianne
Please help me by listening to my queries, about feeling and being ill. Please do not judge me because of my age and the fact that I have M.E.
Please do not blame my M.E, age, or weight, for everything that is wrong with me. You never treated my asthma this way, so why do you have to treat my M.E, as if it is the cause and answer for everything I might phone you about?
Please take my M.E. as seriously as you have taken my asthma, since the day I was born. Please remember that I was diagnosed with M.E. by a reputable doctor at your practice and that it is a genuine medical condition.
There have been times when I have been disappointed and felt discriminated against, because of my M.E. This is because not all doctors, whether full-time or part-time, new, or old, know enough about the illness.
It is the practice’s responsibility to ensure all doctors know about M.E. and take patients seriously when they are worried about their symptoms or have any new concerns.
Please also be aware that it takes a lot of preparation and effort for people with M.E. to contact the surgery and convey what they need or are worried about. As someone with M.E., I can vouch how hard it is to get a doctor to understand what is wrong.
I don’t often find the right words and I can get flustered quite easily. Please bear with me and have patience. I understand you have deadlines and targets, but a little common sense when dealing with people like me, would be appreciated.
A useful tool I found as someone newly diagnosed was counselling. It helped me to grieve the person I was before I had M.E. I understand there are long waiting lists for NHS counsellors, so a recommendation to private services could also be helpful. The ME/CFS Specialist Service was useful, until severe and then very severe M.E. when I wasn’t able to attend outpatient appointments, and the service could provide no support.
Please avoid saying, ‘There is nothing I can do for you’. While this might be the reality, you need to understand just how upsetting it can be to hear.
In my experience, the most useful consultants I've seen about M.E. have been rheumatologists. Although they have not been able to do very much to improve this condition, they were able to find other things wrong with me, that had originally been attributed to M.E. They can do investigations, scans, etc, where GPs cannot.
I hope this has shed some light on how I and other M.E. patients (and now many of the people with Long Covid) will be feeling. The frustration around invisible illnesses and disabilities is very real. Please be a solution and not part of the problem.