Thoughts from an old timer

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.

 

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7 thoughts on “Thoughts from an old timer

  1. lyuba

    Hi Jak,
    I wrote yesterday as a reply to one of your previous posts. I don’t know if you read it, but please do. What you wrote about the initial symptom being a tummy bug very much resonates with the problems we have inmy family. I have been ill I am not even sure fir how long… 10-15 years. For the last 5 my life has been hell. I have felt so ill I wanted to crawl out of my own skin yet all the tests were fine. I was eventually diagnosed with Crohn’s and do was my son, but I know it is not what is making me ill. I also have hypermobility and what appears like MCAS. I have seen a pulmonologist for the burning pain in my bronchi for the last 5 years and insisted on antibiotic treatment just to see if it helps. For 5 or so days I have felt better than ever, but soon after everything returned to what it was like before with the exception that my flushing of the skin and hyperventilation due to mildest stress is a lot more under control. At one point my face, neck, hands were going red and swelling and I was getting severe asthma attack following mildest stress and every time I was at the doctor’s. This made me think that the root might be in bacterial infection. I have previously been tested for Yersinia antibodies. The test was positive. The stool test was negative for y.enterocolitica. My doctor assumed that it was a previous infection, but still gave me an antibiotic. I now believe that it was yersinia pseudotuberculosis and will be re-testing antibodies this coming Tuesday. In my previous reply I wrote about this amazing article that suggests the connection between yersinia infection and the lifelong damage to person’s immune system. What is amazing is that the damage to the immune system can potentially be reversed with the use of antibiotics! !!! Yersinia bacteria is common, a lot more common than most specialists think. I would urge everybody who feels that their problems started following a tummy bug to get tested for TOTAL yersinia antibodies and if result suggests even a previous infection, it might be worth considering a course of antibiotics.
    The article I mentioned in my previous message can be found here:
    https://www.healthrising.org/blog/2015/12/07/infection-chronic-fatigue-syndrome-fibromyalgia/
    All the best to everybody!
    Lyuba

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    1. Jak Post author

      I’m really glad you’re feeling a bit better Lyuba. I’ve had IV antibiotics in the past which didn’t help me at all. You have to bear in mind I’ve been ill a very long time and tried just about everything x

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  2. jen6girls

    I travelled outside the country in 1973 and my symptoms started not long after. That was before the doctors asked that question. I was not treated for my problems until 2001. Found a doctor who prescribed 3 different drugs at once for 3 weeks. One antibiotic with an anti parasite drug and anti yeast. I was better for a short time then got slowly sick again then worse. Antibiotics works for awhile for some people but usually we are given just a few weeks at a time which won’t last. Finally in May of 2017 I convinced my general practitioner to give me more than the 2-4 weeks of Xifaxan and felt better at the end of the 7th week. I’ve now been on them since May. Not all insurance companies cover this drug for more than a few weeks I was told by my Gastroenterologist, so I was surprised they are still paying.

    Everyone is so different that I hate to even mention what helped me. But I’m not healed and still only eat ground turkey with butter and rice and Haagen Dazs vanilla ice cream. Just 3 foods plus Sumatra dark roast coffee with very heavy cream before I have food. After I eat food I can’t have anything but small amounts of water with a pinch of baking soda. I try not to eat anything until I absolutely have to because no matter what it takes its toll on me and I’m ruined. Low dose naltrexone did not work for me after trying for a year. If I want to add other food or take less Xifaxan I have to live on diphenhydramine and Zantac. Both make me sleepy. If they take my Xifaxan I itch from head to toe and have blisters all over my hands. I hope the new biologic works for me but am not getting my hopes up.

    I have fewer conditions than you and I’m fortunate enough Jak that I can take small amounts of pain medicine. When I read about how you don’t have that option it makes me very sad. Your situation is heartbreaking but you face life well and you’re a strong example because you still do for others in spite of your pain. I have always stayed away from drugs but now that I’m in my sixties I don’t care. As long as my body doesn’t reject prescription and over the counter meds I’ll use them sometimes. But since reading your situation I can’t take anything without thinking some people can’t lighten their pain. It’s a reminder that my situation isn’t so bad.

    Thank you for continuing to share. It’s hard work and must be draining.

    From Jen in Ca

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    1. Jak Post author

      Appreciate the comment Michelle. I know my style isn’t everyone’s cup of tea, and in particular I don’t think British irony and sarcasm travels well, but you can only be yourself can’t you and people can take it or leave it. Jak x

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  3. Linda N

    I for one DO think diet can affect a lot ofl diseases. After all nutrients run enzymes. They are the cofactors for enzymes, and without their cofactors, enzymes cannot function. Having said that, diet is just one part to any disease. What I think is wrong with the research done in these areas is that it is so fragmented because the researchers are following the drug model and the double-blind study model. They are all like the blind man and the elephant. One thinks the elephant is like a snake because he is only touching the tail. Another thinks the elephant is like a tree trunk because he is only touching the leg. Etc. etc.

    Disease is so much more complicated than that. Take the person who gets a virus and seemly comes down with M.E afterwards. Then he/she catches another virus and than another. But why is he or she catching all these viruses and not the person next to him/her who was exposed and did not come down with the virus but had an immune system that was capable of fighting it off? Is he or she eating too much sugar (and yes too much sugar does down regulate the immune system) plus has genetic defects that affect his/her immune system, plus lives in a more polluted area, plus is accidentally using certain chemical products that their biochemical pathways cannot detoxify, plus plus plus?

    One person does get relief from symptoms with a gluten-free diet but many others do not. Why? What are all the elements in each individual person that are interacting to produce that person’s particular illness? I don’t think most researchers look at that. And even when they do, can they always fix it or find treatments for it? I don’t think so. But the person who is helped by going gluten-free often thinks that it if worked for them, then surely it must work for everyone else. I only wish such were true.

    I can only speak for myself, and what works for me does not necessarily work, nor can it necessarily work for anyone else, even if they have the same disease and/or symptomatology as me. I had to go back to school to study all those subjects that doctors study, biochemistry, A&P, nutrition (although doctors do NOT study nutrition and that is a sad state of affairs in todays system of health care) just so I could find out what was wrong with me, let alone try to fix it. All the doctors I was seeing weren’t really helping me (and some of them unknowingly prescribed supplements that were contraindicated with my gene defects and actually making me worse!)

    I had to take courses to figure out all of my own gene snps and how they might be fitting into why I was so sick and why I got every infection in the book every time it came around, and why no doctor could help me (in fact being abused by physicians when they cannot find out what is wrong with you is also common in today’s system of health care.) Am I cured? Hell no! There is no cure for MCAS and DAO deficiency. Are my symptoms less severe, and do I have a better quality of life than I did before. Yes. I cannot go off my very strict low histamine diet without serious repercussions and I will always have to take DAO supplements and other supplements to support those biochemical pathways that have gene snps. But life will always be very tough for me and for all of us with this illness, and what works for me does not necessarily work for anyone one else.

    Until researchers get to the point where they start looking at and treating the person with the disease instead of just looking at a set of symptoms and naming it this or that disease and trying to find cookbook treatments that are one size fits all for anyone with that named disease (and a few of them are but not many) we are not even going to begin to scratch the surface of how to help people with any manner of disease or disfunction.

    Notice I do not use the word cure. Just the word “help” So many diseases are not curable. Especially those with genetic origins. Sickle cell anemia has no cure. Doctors just manage the crises. Phenylketonuria (PKU) has no cure. The condition is just managed with a strict diet devoid of all phenylalanine and supplemented with tyrosine because the person cannot break down phenylalanine into tyrosine. Cystic Fibrosis has no cure either; like Sickle cell anemia. I could go on but I think the readers here get the point.

    Other diseases do have dietary origins or at least dietary components. Type 2 diabetes is one example I can think of right off the bat. And it can be managed with diet in most cases.

    Maybe in the future researchers and physicians will find a way to fix such gene defects, and we will understand more the interactions between genes and environment and all that and how all that works and interacts to create disease, but frankly I do not think it will be in my lifetime or my children’s lifetime or even my grandchildren’s lifetime. Sadly, such is the way of things for now.

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