On the 4th December 2024 I finally had my initial interview with the ME/CFS service in Leeds.
This event took its time coming. In 2018 I felt very fatigued. Due to other symptoms I suspected I may be diabetic and tests (which actually saw me in A&E being seen within 10 mins of coming in!) confirmed that I had type 2 diabetes and it was WAY out of control! Over the following months, my blood sugar stabalised with medication but I was still really fatigued. In fact it felt like someone opened a tap in my foot and all my energy bled out.
I began to suspect that this was more than my diabetes and reading around I started to wonder if this was Myalgic Encephalomyelitis or ME (often also called Chronic Fatigue Syndrome or CFS). However, I knew I was still getting used to my medications and was sure if I brought the fatigue up then the response would be that it’s just me getting used to the medications so I did not make any appointments to look into this.
Finally in 2020 I decided this was not getting any better and I had my medications for diabetes stabalised now for a few years and were not changing so it was clear this was not the issue. I made an appointment with my GP and he ordered some blood tests which came back with no useful results. However, at this time COVID then hit and I did not want to be going in and out of doctors surgeries where I felt “unsafe” from COVID. It would be some time till I started looking into this again.
In 2022 I started making appointments again and it took a long time with nothing useful. It was a round of tests, suggestions, lack of results, then more tests etc. I remember a doctor telling me “if this doesn’t help then we may refer you to rheumatology as they deal with ME/CFS”. It didn’t help. I was not referred. Eventually in September after trying some medication for several months with no result a doctor simple showed me on his screen where they had me down as suffering from ME/CFS and Fibro Myalgia. At this stage – nothing else happened. That was supposed to “make it all better” apparently.
It was not till I made an appointment again in 2023 and spoke to the doctor about fatigue, pain, restless legs and depression that it was picked back up again. He ordered more tests, spoke to me at some length and actually wrote down what I said. This started a fairly short series of appointments that culminated in him sending a referral letter for me to the Leeds ME/CFS Service. Initially they rejected the referral due to my diabetes being out of control again (due to a medication shortage) but then after he sent them another request – it was accepted.
On 4th December 2024 then I was having a video consultation with a doctor from the Leeds ME/CFS Service. It went on for just over two hours and it was mostly about asking me questions about my symptoms and then if they thought I would benefit from their service.
After asking many questions and listening to what I had to say she said that I fulful all the criteria for classifying my condition as ME/CFS This was quite a big deal for me as although a doctor had already said that – there was a distinct feeling that they really didn’t understand the condition so their “diagnosis” was tenuous at best. This time it was a specialist in ME/CFS who said she believed I had ME.
The next stage then is to get a place on their programme so I am on their waiting list for this. The programme is currently delivered online which is great as getting to Leeds is hard for me. It is partly a talking therapy programme so I am not sure what help it will be. The programme is split into two sections: a series of group sessions which I am guessing will be people talking about what helps them manage etc – followed by one to one sessions which I believe will be aimed at helping me put into practice strategies that may help. I will give it a go and see.
It IS the only thing available and although the aim of the programme is to help me feel better by dealing with the challenges adaptively and get back into being able to do my work and other stuff better – I can’t see that happening. Time will tell.
