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
I’ve just read some of the open letters sent to you for medical professionals and government bodies. It makes my heart bleed. It seems that all over the UK people with ME/CFS are constantly being let down by the very people who are supposed to be helping us.
We go to our GPS, they fob us off with antidepressants, CBT etc. It doesn’t work. Benefits people are determined to reject any cry for help. We don’t just suffer a debilitating illness with no real treatment or cure. We are constantly lied to. We lose any chance of improving our lives. We lose our jobs, miss out on enjoying time with our children, friends, and family.
All our energy is used up just surviving. We end up alone, isolated, discarded by society. We are ridiculed by people who should know better.
Tell me please why my husband has to work himself into an early grave, 60-80 hours a week just to make ends meet because I can’t work? I can’t walk to the end of the road without feeling like I’m about to collapse from exhaustion and confusion, yet I apparently don’t qualify for a mobility benefit or disabled badge.
I don’t have the strength to keep fighting for what I should automatically be given. Why do the sickest people in society have to fight for recognition and help? I live in a house that I am ashamed of because I can’t clean it. I’m ashamed to be with other people because l know my personal hygiene is suffering.
I’m losing the will to go on. Not because I’m depressed, but because I can see no light at the end of this tunnel filled with pain, exhaustion, and lack of care.