Yeah yeah yeah. Health, M.E. My favourite thing in the entire world.
Here's a summary:
Started pacing properly. Started taking Co-Enzyme Q10. Feeling the best I have in five years, all my mate's noticed and everyone was really happy for me. It was great, not back to normal great but holy shit I can get out and socialise great. Then I had to move house with only a few people to help me so I crashed pretty hard. This was four weeks ago, I'm still not feeling great, not really getting out of the house at all and pain is fluctuating pretty badly.
I'm off to Portugal in a week but not stressing about the travelling as I know I can do it and it's a short flight, hot weather and peaceful surroundings always make me feel much better. What I will do when I get back is produce an M.E travel guide specific to this trip. Lucky people you.
I've also just found out I've never been tested for Lymes disease. With all the extensive tests that were carried out I'm pretty unhappy about this. I've ordered a testing kit from IgeneX which are much better than the NHS ones which I hear are next to useless. It will cost me though, around $260 but for peace of mind I'm happy to do it. If it turns out I do have it, then it's something that can be treated.
I'm also going to start taking LDN (Low Dose Naltroxene) due to a large amount of anecdotal reports about it's effectiveness in M.E and indeed Lymes. With the absence of peer reviewed evidence that's all you can do, trust your instincts, analyse anecdotes thoroughly and make that decision.
Life for the last five years has been very tough. Not moaning, just stating a fact. Part of what bugs me so much is the apparently never ending amount of conflicting information surrounding M.E. It's an auto-immune disease. It's a neuro-immune disease. It's an immune system irregularity. It's actually Lymes. It's something to do with AIDS. It's a virus, it isn't a virus. It's a virus but with psychiatric components. M.E isn't CFS. CFS is M.E in Australia and the US. Some patients diagnosed with M.E don't have M.E. Many CFS patients actually have M.E unless of course they're in the U.S or Australia in which they do because CFS is M.E there. Oh yeah, it's also M.E/CFS or CFS/M.E. How are patients supposed to interpret this junk?
The psych's think it's a functional disorder, great, where's the next treatment coming from and when? What is it? More GET/CBT? Brilliant. Next to useless and in some cases dangerous. It's not dangerous you say? Patients are lying? The peer reviewed evidence says it's safe? Oh, right, the peer reviewed evidenced studied a whole host of different patients with different illnesses and the data on who got worse isn't there for us? Other evidence suggests the complete opposite? Who in their right mind would trust this!?
Other psychs think it's a physical cause exacerbated by psychiatric components. Great. Lets go with that, what are the treatme.....Ah yes, same issues as above. Brilliant. But then we have peer reviewed evidence detailing immune system abnormalities and a host of experts detailing how convincing the evidence is that it's a physical illness. Now personally, I think the evidence of this is pretty damn solid, but I'm not here to wax lyrical about what I think causes M.E, just the complete mess and conflicting messages that are sent to patients, who are given little to no support from their GPs and sometimes outright hostility and abuse.
Lets get one thing clear, nobody should ever blame a patient for their illness, whether it's psychological or physical, depression, anxiety, cancer, M.S, M.E, even hypochondria. These all need treating. How far do GPs and the medical profession think they're going to get in treating patients if they blame them? Can anyone tell me? Because I doubt it results in much success.
You are failing patients and you will be held to account, I will make sure of that.
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