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The original was posted on /r/cfs by /u/twoonty on 2025-08-11 16:12:27+00:00.
Apologies if this question had been posed before, but I was thinking about this and would be interested in people’s opinions.
I’ve recently had contact with my local NHS Chronic Fatigue Clinic and, like many others, have been extremely underwhelmed and disappointed at how little they offer, especially to someone on the more severe end like myself. So I asked myself the question: what’s missing from this service? What would the perfect ME/CFS service look like?
For what it’s worth, here’s my ideas:
-You are seen for a long appointment by a chronic illness specialist who believes you and takes you seriously, runs a wide array of tests and also screens for common comorbidities (e.g. POTS, MCAS, EDS).
-Doctors are willing to prescribe LDN and LDA, and are open to prescribing supplements or more ‘experimental’ treatments if the patient thinks it could be beneficial.
-You are given access to pain medication if you need it, and are listened to if you say your current pain medication isn’t enough. You are potentially given access to medical cannabis (I have found cannabis helps me rest and stay sane when I’m very unwell but medical cannabis is vastly out of my price range so I’m having to buy it illegally)
-The attitude of the service is: You are disabled now, and you are unlikely to stop being disabled. However, this isn’t a death sentence. With the right treatment and support there is potential for you to have a decent or even good quality of life. (I found the NHS service to have a very anti-disability stance)
-You have sessions with an occupational therapist where you go through every area of your life and assess where you’re spending energy. Appropriate mobility and disability aids will be provided to help reduce energy usage in all areas of your life. If you need to go part-time or quit your job, they will be honest with you about this. There will be support through the service with applying for disability benefits.
-You get access to remote therapy/counselling to help with the emotional toll of this condition. You get access to a remote support group of sufferers where you can share experiences and find community.
What are yours thoughts? I guess this service would best suit someone in the moderate/severe category like me, so does anyone have any ideas that might apply to people more or less severe? I don’t particularly care about what is practical or realistic- just thinking best case scenario here.
TL;DR: Disappointed by the NHS ME/CFS service so I’m imagining my own ideal service. I’m interested in other people’s ideas about what this could look like.