Open Letters to Healthcare Professionals from people with ME/CFS – Part 1 Kate and Margaret

June 1, 2021


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…

Kate

I was born seventy-three years ago, in the same year as our incredible N.H.S. was established.

Over the following years I have (literally) been the beneficiary of many hundreds of thousands of pounds worth of care and treatment, and for this I am forever grateful and thankful.

I have watched the stress and strain caused to all in the profession. None more so than in the past months with the effects of the pandemic. We have all listened to and watched our broken doctors and nurses.

We have listened to how they have dedicated their time (and in many cases their lives) to caring for our nation. It feels so inadequate to give thanks but we do, to you all.

During these unprecedented times, many people have been ill, developed diseases and needed to get advice and support from their Doctor. Sadly, this has not been possible for very many of us.

We are left feeling alone, abandoned, concerned about our future health. We are desperate… We are human beings and we need YOU our Doctors.. We need to be listened to… We need and deserve to be given your professional advice, support, and knowledge… especially now.

Margaret

I know that you must feel that you can do very little for people like me who have ME and I expect you feel at a loss when trying to help me. A smile and a friendly approach go a long way. Please tell me that you will do all you can to help me. I don’t like you rolling your eyes when I mention ME. I don’t like having to explain ME when I go to A&E as your training didn’t cover ME.

Although I may not have had life threatening problems, I felt very frightened and alone when I was first ill. Your reassurance that the tests didn’t show anything didn’t really help as I still felt incredibly ill and couldn’t see an end to how I was feeling. I don’t bother going to see you about ME any more as you don’t offer me anything and don’t seem interested in how things are for me nearly 20 years after getting ill.

I lost my teaching job and initially had no chance of an early retirement pension as society seemed to think that I would get better. After four years I

had to pay to see a “specialist” who stated that I would not work again, thus allowing me to get a pension. My local area had no specialist ME doctor, just a GP with an interest. If I had been off work with stress I could have had a pension instantly. I was lucky that I had a husband to support me financially. Why is it so difficult to get ESA or DLA? Why put me through two appeals when I haven’t improved? Why do so many health professionals still not understand ME?

The lead person for our ME service was a psychologist and the approach was to help me to deal with my “new normal”. There was no expectation that I would get better. The health professionals were surprised that attending the course was exhausting. They didn’t seem to know about post-exertional malaise (PEM) and tried to get us to increase our activity beyond what was possible.

So, nearly 20 years later and there are still unflattering articles in the media, people think that it’s just fatigue and don’t realise just how life changing ME is. Why is so little spent on research into ME?

I’d love there to be a cure but in the meantime, sympathy and understanding would help. I’m still the same person inside but my unreliable health stops me from doing as I would like.

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