Question

I asked my GP to refer me to the ME/CFS Clinic at our local hospital two months ago. She was asked to fill in a form that provided a lot of information about my symptoms and how they affect me. I also had to have a lot of blood tests – the results of which all came back as normal.

Since then I haven’t heard anything further about arranging an appointment. Neither has my GP.

What can I do?

Answer

The purpose of the pre appointment form and all the blood tests – which many of the ME/CFS referral services now ask the GP to complete is to help confirm that you do actually have a diagnosis of ME/CFS, or are likely to have a diagnosis of ME/CFS. So all the blood test results should come back as normal.
If not, this should raise a query as to whether there is another medical condition that hasn’t yet been diagnosed.

I’m afraid that progressing hospital appointments when this sort of filtering system is in operation can easily result in things going wrong with the NHS bureaucracy which appears to be what has happened here.
So I would check the contact details for the service you have been referred to and phone the administrator to find out what is happening with your appointment. If you are able to fit in a very short-notice appointment you could also suggest that you would be willing to attend a short-notice cancellation appointment.

The MEA website has a directory of all the ME/CFS referral services throughout the UK – along with contact details:

https://tinyurl.com/mr3w2sx3