Reddit Reddit reviews Diagnosing and treating Chronic Fatigue Syndrome: its mitochondria, not hypochondria

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Diagnosing and treating Chronic Fatigue Syndrome: its mitochondria, not hypochondria
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3 Reddit comments about Diagnosing and treating Chronic Fatigue Syndrome: its mitochondria, not hypochondria:

u/Z3R0gravitas · 3 pointsr/cfs

See a different GP each time until you lock onto a good one, quite possibly one that is the hardest to find appointments for. I've had more luck with younger docs over the years, anecdotally. Still, there will probably be nothing at all they are allowed to do for you, with CFS, presuming your standard, basic blood tests are even vaguely normal. In my health authority area, anyway (Warwickshire), supplements (e.g. CoQ10) that were previously prescribed are now blacklisted (and ADHD provision no longer exists at all, but that's a separate whinge).

You'll need a good, very supportive GP on your side if it comes to claiming Employment Support Allowance (the forms and 'medicals' for which seem tailor made to have blind spots for CFS). If you thought convincing your family/GP was hard...

Anyway, if (as I see from some of your other posts) you do have POTS symptoms, you may be able to get specialist treatment and prescriptions to help with that. A friend of mine, up north, does, although I think she was perhaps a little lucky, postcode wise.

Regarding CFS in general, I've recently seen it described as a immune mediated brain disorder with strong links to the gut, and I quite liked the ring of that. There are usually major metabolic disturbances, if one is able to look closely enough, high oxidative stress (directly induced by exercise), inflammation, dysautomnia, gut biome imbalances/derangement, etc. Point being is that it seems to be a multi-system issue, where the body's balance is turned inside out, like an inverted umbrella.

Each of the previously mentioned components (nervous system, immune system, gut, metabolism) are kind of like like spokes that have been bent backwards. This is good, in that you can attack the problem from many potential angles, and possibly get little benefits from each intervention. But to put the whole lot right at once may require much more effort and co-ordination, as with an umbrella, and may be more prone to breaking in future, it seems (or already was, but hadn't been stress tested previously).

Edit: oh, and most mental/brain diseases may turn out to be similarly linked to gut dysfunction, it seems, for recent research directions. With depression possibly a an inflammatory state of the gut, feeding back to the nervous system, and back around, in a closed loop. So that diagnosis may not be far off, even if the available treatments still are.

Some specific notes:

Don't be encouraged to push yourself into exercise (via GET, etc), even when if you feel spontaneously great. A low level, and outside time in trees and sunlight are great psychologically, hormonally. Don't turn down CBT (or anything) out of hand, if offered. Show willing, if able, I guess. I've had neither, but if anxiety/thought processes are tripping you up, in particular, then sensible to address them. Meditate, even. Certainly stress can be a big drain of bodily resources.

CFSs are in desperate need of the nutrients (minerals, vitamins) from vegetables. The 'Free From' supermarket range is a great concession to the acknowledgement of food intolerance, and fantastic for those who have Coeliac disease, but tend to be even worth than regular processed foods, in terms of being empty calories, very poor nutrient density, etc. Try to make a best effort to increase intake of any vegetables that you already like, and find ways to prepare new others that might be more palatable. It's a long, ongoing process and it's hard work, at first. I only managed to start doing this properly myself after dietary exclusions gave me a whole new lease of life, a couple years back. And preparing food does use a substantial proportion of that extra energy, on most days, but worth it. Basically, something like paleo, or "stone age diet" seems to be the way to go, which aren't far off SCD (specific carbohydrate diets).

Get nutrients from a careful supplement program too (essential if diet is poor). Can be complex to implement with multi-faceted personalisation that you'll need to implement. Check out Dr Sarah Myhill. She's based in Wales, the only UK CFS specialist doctor I know of who seems to be worth a damn. I kick myself that I didn't manage to book in with her a few years back, before she became too inundated, after her book: "Diagnosis and Treatment of Chronic Fatigue Syndrome: Mitochondria, Not Hypochondria" - highly recommended, and much of that same great, well rounded info is available via her website.

To go into even more detail, including most of the many relevant supplements and an overview of the various theories and treatment plans for CFS, check this cheep ebook.

While bacterial and yeast overgrowth of the upper gut definitely does happen, it seems to be something that is overly jumped at, perhaps because of how uncomfortable and distressing GI symptoms can be. Certainly an aunt of mine, in the USA, claims to have been cured from her years long bout of fatigue after being treated with a targeted prescription anti-microbial/anti-biotic (Xifaxan, I think, plus some other things), but nuking the whole gut seems like burning down a village to save it. I've not found sufficient evidence for such an extreme measure, myself.

I've had IBS (D and C), related to food intolerances: diary, egg, yeast (confirmed by Yorktest IgG testing) and most notably, histamine intolerance. Cutting high histamine foods is one of the trickest, but easily most powerful interventions I've done. A rash after eating yogurts (a fermented product) flags this up for you too, in my mind. High (serum) histamine (via intolerance or mast cell activation disorder - MCAD) can cause all manner of crazy symptoms, from dysautomnia, halucinations, sleep disturbances, rashes, anaphalaxis, etc. If the upper gut is damaged and liver metabilism is impaired then histamine might not be getting broken down fast enough, it seems. Also, dysbiosis can contribute massively, and in any case, it seems quite common in CFS, especially along side other food intolerance and/or 'leaky gut'.

I'm suspicious of anti-acids - stomach acid is needed to sterilize ingested food, to help keep the small intestine free of microbes and for digestion of food. Poor break down may slow transit and feed overgrowth/imbalance, causing bloating (and ironically heart burn).

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Sorry, I've blurted a whole lot there. Hope some of it is useful and good luck. Given that you've not been ill for long, and you had sudden onset, I think your chances of spontaneous recovery are probably as good as they can be, anyway. And the field of study and treatment currently seems to be spooling up quite fast, now. :-)

u/gilablue · 1 pointr/cfs

Damn. It's hard for me to give advice because I had different infections from you.

I bought this book by Sarah Myhill here:https://www.amazon.com/Diagnosing-treating-Chronic-Fatigue-Syndrome/dp/1781610347/ref=sr_1_1?ie=UTF8&qid=1499729722&sr=8-1&keywords=mitochondria+hypochondria

I've made HUGE progress with the recommendations in this book. However, googling RMSF comes up with a bunch of stuff related to Lyme which is extremely serious. You will need to treat the RMSF and ME/CFS together in order to get better and you can't do much which means you will need help.

Try and find someone who can help you read the book. If you can't, just work through it slowly as much as you can. The first thing she is going to recommend is that you get all your meals delivered and made for you if you aren't doing that already and that you switch to a paleo ketogenic diet.

Sarah is really good at what she does. She was profiled in the documentary "What about ME?" which you should also watch and get your close family to watch (in case they need help to understand) if you can: http://www.imdb.com/title/tt1770767/

u/janeingram · 1 pointr/cfs

This is the one: https://www.amazon.co.uk/Learned-Optimism-Change-Your-Mind/dp/1400078393

Good luck. Also, for the depression cure, one of the steps he recommends is exercise. Obviously that won't work for us. Everything else he recommended helped me, even CBT. Note that this is NOT the same CBT that was done in the PACE trial.

Also, Myhill's book on Mitochondria really was a game changer for me. It took me almost a year to read it because on some days, I could only read a paragraph at a time. I don't know how much research you've already done, but at the time, I really knew nothing about ME/CFS and the book was a huge help. https://www.amazon.co.uk/Diagnosis-Treatment-Chronic-Fatigue-Syndrome/dp/1781610347

virtual hugs