My post about being clueless as to what causes disease and in particular that we can somehow eat our way better has resonated with many of you, so I thought I’d do a follow-up specifically about M.E., a disease for which there are, if you believe the world wide web, a bewildering aray of “treatments” and even “cures”, many of which are food related.
I’ve had M.E. for over twenty years and like to think I have more experience of the disease than someone who has been sick for a year or two or researchers new to the field. In the initial phase I was so ill I nearly died. I then spent 10 of the best years of my life in bed having seizures, puking and crawling to the toilet every day of every month of every year without remission, and the latter 14 years functional(ish) but still very poorly. And I’m not on my own. I have many friends who got ill at roughly the same time as me but, unlike me, are devastatingly still as sick as the day they first developed the disease. Emaciated because they can barely eat, wasted because they can barely walk, isolated because they can barely speak.
I know that people who are currently ill think that they are the pioneers of this disease and are trying novel treatments by using oxygen chambers, drinking Kombucha tea, shovelling in probiotics, taking this drug or that drug, not eating gluten/dairy/sugar/carbs/insert-just-about-every-diet-known-to-man-here, eating worms, having enemas, drinking whale pee (just kiddin’ , in case you were wondering 😉 )………the list goes on. But they are not. The original ME sufferers have already been there, done that and got the t-shirt. We have not laid in our sick bed and given up. We have fought like cornered tigers to get better. My parents spent over £20,000 on tests and treatments for me but none of them worked – in fact, 80% of them made me ten times worse. Please, I beg you all, learn from our journey and stop wasting time, energy and money trying all this crap then torturing yourself with guilt because it hasn’t cured you.
Much of the research into M.E. at the moment is concentrating on fatigue and the role of energy metabolism but here’s the thing – I am not fucking tired. I don’t know how many times I need to say it. M.E. has nothing to do with chronic fatigue. Nothing. NOTHING.
When you get the flu or a really bad cold you feel absolutely wiped and barely have the energy to get to the loo. This doesn’t mean there is a fundamental problem with your body’s mitochondria or how it uses energy from food. It means that, for reasons as yet unknown, when our immune system is in action fatigue is a by-product. A secondary symptom to the main event. And so, I am utterly convinced, will be the “fatigue” associated with M.E.
I say this with such conviction because I have lived with M.E. for nearly a quarter of a century. It started with a tummy bug, ie an immune event. It then really took hold after gastroenteritis, an immune event. I became severely affected following travel vaccinations, another immune event. I saw an almost overnight remission of all my symptoms following another vaccination and these days know I’m coming down with a bug because I feel freakin’ brilliant for the 48 hours preceding it. None of which is affected by not eating carbs or sugar, or having oxygen therapy, or taking some supplement or other, or some drug or other, nor bugger all else. My best friend is a clinically diagnosed Coeliac, who hasn’t eaten a speck of gluten in over a decade, yet is still sick with M.E. Another friend can barely eat and lives on an almost exclusively liquid diet, yet still has M.E. Food is not the answer, never has been and never will be.
M.E. is an immune disease. End of discussion. I don’t even think it’s an auto immune disease, but an acquired immune disease. Something external usually a vaccination or virus (the type of which is irrelevant) triggers the immune system, inbetween turning on, doing its thing and turning back off again something unknown goes wrong, and M.E. is the result. It’s the “something unknown” bit that’s the puzzle and needs to be the focus of research.
The fact there are currently no answers is a bitter pill to swallow. So-and-so improved after not eating sugar for six months so it has to be the cure, only of course so-and-so didn’t actually have M.E. in the first place. Someone else discovered they had some rare infection and were cured by treating said infection, in which case they didn’t have M.E. either. When there is no diagnostic test people are mis-diagnosed all the time, especially when some Doctors think that everyone who is “fatigued” has M.E. And this is compounded by the fact that, until last year, severely affected sufferers weren’t included in research studies because they were, ironically, too sick to get to the Hospitals where said research was taking place. Thank God the likes of Ron Davies has changed that outrageous situation and we might finally be looking at M.E. patients and not CFS patients.
I’m not saying that people with M.E. never improve, though it is rare. I’ve improved for no good reason I can find. One friend improved slightly using low dose Naltrexone, while for others it had no effect or made them worse. Jen Brea, director of Unrest, has improved a bit with her treatment, though is still wheelchair bound and struggles to talk for long periods. But none of us are cured and most of my friends have seen no improvement over the decades at all, despite trying every ‘treatment’ known to mankind.
I know I’m kind’ve wasting my energy writing this post, because anyone with M.E. reading it thinks that they will be the one that is the exception to the rule. They will find the cure that the millions of sufferers that have gone before them haven’t. So I’ll wish them luck and say I’ll see them on the other side of their journey, still sick, financially poorer, even more exhausted but wiser and finally at a place of peace and acceptance.