Fogbuster
Senior Member
- Messages
- 269
Hey guys,
Could you please recommend me the most experienced, knowledgeable and cutting edge CFS/ME specialists in the UK?
Someone I can discuss my symptoms with, get specific testing, cutting edge treatment (if there is such a thing?), etc. I live in the south, on the coast. But willing to travel far and wide if necessary.
Preferably, I'd like to see someone who specialises in improving immune dysfunction and cognitive impairment in CFS/ME patients.
In order of the best symptom reducer for me: 30 mins to an hour sun exposure, moderate to extreme cold exposure, CBD oil, walking in the woods for 20 mins+, licorice, hi-maize, zinc and 5htp, all have an effect of putting me back in kilter. It feels like everything normalising. Interestingly, they all have an immune modulatory effect.
My main troubling symptom is chronic brain fog I get from my extensive list of food/chemical sensitivities, along with the varying wired fatigued state which ensues after eating or drinking certain foods/beverages.
I react to the exact same food groups people with mast cell disorders react to, their most problematic foods are my most problematic too. That's pretty interesting, but confusing, as I don't get anaphylaxis, flushing or bad skin issues. I also got nothing significant back from my histamine, tryptase and one other mast cell test. But I respond positively to some mast cell stabilisers...
If the CFS specialist is experimental, that's a big plus for me. I know this is probably a pipe dream, but if there's a UK specialist who'd be willing to use IVIG, a pharmaceutical immune modulator or a mast cell stabiliser to try and treat my symptoms, that'd be a game changer.
Would they be willing to do this if nothing significant has come up in tests for me so far? I have my doubts.
Perhaps if they knew what to test for based on my specific collection of symptoms, we could get closer to a cause or at least have a better picture of what's going on.
Thanks for reading!
Could you please recommend me the most experienced, knowledgeable and cutting edge CFS/ME specialists in the UK?
Someone I can discuss my symptoms with, get specific testing, cutting edge treatment (if there is such a thing?), etc. I live in the south, on the coast. But willing to travel far and wide if necessary.
Preferably, I'd like to see someone who specialises in improving immune dysfunction and cognitive impairment in CFS/ME patients.
In order of the best symptom reducer for me: 30 mins to an hour sun exposure, moderate to extreme cold exposure, CBD oil, walking in the woods for 20 mins+, licorice, hi-maize, zinc and 5htp, all have an effect of putting me back in kilter. It feels like everything normalising. Interestingly, they all have an immune modulatory effect.
My main troubling symptom is chronic brain fog I get from my extensive list of food/chemical sensitivities, along with the varying wired fatigued state which ensues after eating or drinking certain foods/beverages.
I react to the exact same food groups people with mast cell disorders react to, their most problematic foods are my most problematic too. That's pretty interesting, but confusing, as I don't get anaphylaxis, flushing or bad skin issues. I also got nothing significant back from my histamine, tryptase and one other mast cell test. But I respond positively to some mast cell stabilisers...
If the CFS specialist is experimental, that's a big plus for me. I know this is probably a pipe dream, but if there's a UK specialist who'd be willing to use IVIG, a pharmaceutical immune modulator or a mast cell stabiliser to try and treat my symptoms, that'd be a game changer.
Would they be willing to do this if nothing significant has come up in tests for me so far? I have my doubts.
Perhaps if they knew what to test for based on my specific collection of symptoms, we could get closer to a cause or at least have a better picture of what's going on.
Thanks for reading!