That sounds pretty significant.
I don't know about that group. I belong to the Common Variable Immune Deficiency (CVID) group, where the UK patients claim it's plentiful. Perhaps the ICD10 code is the key. In any case, you might try contacting IDF directly and see what help/advice they can give.
Can you also talk to your elected officials?
Hi, Thanks for your comments.
I contacted my local Member of Parliament (MP) who wrote to the CEO of the Hospital were I'm a patient. However, she did say she was not able to influence clinical decisions.
I had an appointment this Monday and the consultant immunologist said he didn't know anything about any communication from my MP. I felt dehumanised. I contacted the MP today and informed her.
I saw a consultant I'd not seen before and he was slightly more open then the others. He said my IGg would have to be around 4 (the reference range here is, 6-16, mine is around 5.1). He also said that I hade strong vaccine response.
I once again explained my personal circumstances, my wife has long covid/severe ME/CFS and spends most of the day in bed. And my fatigue was disabling (I'm severe) and I also spend most of the day in bed. We have a 12 year old whose going through some challenging changes and we just cant help her and she needs it. He appeared to just switch off....
I have some blood tests coming up to retest my immunoglobulin levels.
I still have a few options up my sleeve, but to be honest I don't think they will improve my chances. The NHS is in disarray. My story is just one of thousands of failings by the NHS. These failings are in the press daily, and the NHS openly admit their failing. This has been caused by 12 years of government funding cuts and the pandemic. But, I'll only give up when I'm dead.