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 Doctors, Nurses and Consultants,
I’m Andrew and have had ME/CFS for over 20 years. It’s been a difficult road, but you have seen me over that time to try to help. Some of you have been helpful and some have been understanding, and I thank you for that.
However, on the flip side some of you have little understanding and suggested, for example, my condition might get better with some sunshine, or you have asked me to just take anti-depressants. Some of you have offered management techniques, especially mental ones, so I can cope with my limited physical ability. And they have been very helpful in changing my thinking and outlook.
Over the years I’ve seen lots of you in an attempt to recover. However, the two doctors that have helped the most have ironically been disciplined by the General Medical Council and have restrictions or bans on their ability to practice in this area.
Those doctors had a genuine caring interest in getting people better, and I commend them for it. So called “mavericks” like them may upset the NHS rules, but they may also hit on a breakthrough, which in turn could help vast numbers rid themselves of this truly awful disease. Indeed, the need is even greater with more people suffering from unexplained Long Covid.
Today, I’m now using private techniques to help me, and I will never stop trying to cure myself. I too have a good prospective life ahead and many fulfilling things to do. However, at this time, I’m restricted and for example, can’t go on any holiday. My wife goes alone. Also, I can’t go to London to visit my daughter and see her new flat.
Pandemic or no pandemic, I can’t do too much and even have to miss family funerals to honour and remember people that were dear to me. That’s hard. This is not how I want my life to be but I will always try to improve my situation.
So, when I explain to you, the professionals, that I’ve taken Ice baths, vagus nerve stimulation, meditation, lymphatic drainage, yoga, Pale Keto diet and more, you’ll understand my drive to recover. I also ground myself on the earth, have good sleep hygiene, use a Shakti Mat, and take a wide range of dietary supplements.
All this to you may seem like quackery, but I do it because something might help. I’ve also had private tests of my mitochondria, blood levels and even recently took a stool analysis (eeuchh!!). Nothing has revealed the cause yet, although none of this is under the NHS.
Unfortunately, the NHS have left me in a “dead end” and like so many of us we are left to cope doing what we can. The worst is, you’re not even offering me hope through research, so that I, and others, could maybe see some light at then of this dark tunnel. Instead, I must try to help myself and see what I can do on my own.
Good luck in your lives and careers, and I hope this helps you understand my position and to do something positive to help others like me.