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
Please be aware of the effects of going through the peri-menopause, and then the menopause, for women with ME.
The menopause is very much in the news right now and the effects on healthy women are being documented well: fatigue, brain fog, joint pain, low mood, to name but a few.
For women with ME these symptoms were long present before the menopause reared its head. So, when someone like me asks for your help don’t just explain that the menopause is just a ‘natural phase’
and that ME has no cure.
Some of the well-documented treatments for women going through the menopause, such as HRT, physical exercise, and dietary changes really do help women in fairly decent health to start with. But, if you have ME, especially in its debilitating stage, you can barely move. You are lucky if you can prepare a meal.
The menopause and post menopause put women at risk of all sorts of long-term issues including brittle bones, cardio vascular disease and even dementia.
How can you help? Learn more. Get involved with menopause education. Only one woman in ten of the age group associated with menopause currently takes HRT. This needs to change. It might not be for everyone, but it is worth trying if a woman is suffering. Hot flushes and night sweats exhaust healthy women. For those of us with ME, they are intolerable.
If we ask for your help please listen and know that anti-depressants should not be the answer during the menopause. People with ME often feel locked out of healthcare and many women just give up trying to get help. If healthy women are fighting to be heard about the menopause, those silenced by ME have even lesser voices.
If we come to you for help listen, and act, when we have spoken. Don’t try and palm us off or tell us to get on with it. I am 51 and have had ME for nearly 20 years. I’m already doing my best to do that. But I’m worried for my future.
HRT is not an expensive medical treatment. It can’t cure ME, but it can help many women with menopausal symptoms which, added on to ME symptoms, become harder again to endure.
Be curious, be kind, be informed, and be ready to respond to us. It will make a huge difference.