The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Why ME/CFS is a result of the histaminergic system in overdrive

Discussion in 'General ME/CFS Discussion' started by redo, Jan 22, 2018.

  1. ljimbo423

    ljimbo423 Senior Member

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    Ginger is also a prokinetic, so it might be helping in that way.
    link
     
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  2. Runner5

    Runner5 Senior Member

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    If my GI is upset and I have the gurgles I can take a ginger capsule (NOW brand, although I could just chew up raw ginger) and within about 5-10 minutes -- no problem. It quiets everything down in a hurry. Not sure what prokinetic means, sorry. I'll google.

    I've tried then you know, taking ginger with every meal or heavy dosing ginger but it just made me feel ill and it didn't really do anything above and beyond preventing gas, bloat, gurgles.
     
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  3. wastwater

    wastwater Senior Member

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    Abortion drug raised heat shock protein in the context I saw it,think it was hsp70 maybe that’s helpful
     
  4. Wishful

    Wishful Senior Member

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    My disorder started as a type IV food sensitivity, with a precise, consistent 48 hr (+/- less than 15 minutes) delay. After some months of that, I tried a rotating diet. That helped avoid the flare-up of symptoms, but not the baseline symptoms, and my delay time abruptly changed to a precise, consistent 17.5 hrs. Two and a half years after the initial symptoms, I ate a few cherries. That caused very severe symptoms, and abruptly changed the delay to 23 hrs and around 37 minutes. A few days after that, I got food poisoning from some spoiled coconut milk in curry, and that apparently cured the type IV reaction. It took me a long time to realise that, because I had that precise, consistent 20-minute delayed reaction to meals. 20 minutes is way too short a delay for normal type IV reactions, but the response was identical to the earlier 48-hr one and the shorter one, so I just assumed it was an atypical type IV reaction. Later observation and experiments showed that it was related to starch and sugar ingestion causing increased tryptophan transport across the BBB.

    You might try some more specific experiments to figure out what affects you the most. Corn starch is quickly digested and lacks tryptophan. If whole grain wheat or oats bothers you, try one of the low-gluten grains to see if gluten is an issue for you. Try some other unrelated varieties of whole grains, such as millet or amaranth or quinoa or whole-grain rice. They have different levels of amino acids, so maybe some help/hurt more than others that way.

    Tryptophan worsens my symptoms. Avoiding dietary tryptophan, even for months, doesn't really help, but higher than normal intake makes the symptoms worse. I verified that tryptophan transport was involved in the 20-minute delay by taking BCAAs along with a starchy meal. The BCAAs block tryptophan transport, and they did indeed block--or at least diminish and spread out to insignificance--the increase in symptom severity. If you have BCAAs, try taking them with or before a starchy meal and see if it blocks the otherwise expected 20-minute effect.

    Since I can't tolerate tryptophan for insomnia, and I don't like melatonin's effect (leaves me groggy the next day if I take it after maybe 4AM), I take 5-HTP if I really need to sleep. That works for me. Some people become dependent on melatonin for sleeping; I don't know if taking 5-HTP has the same risk. I very rarely bother with it, so I'm not too concerned.

    The other thing I'm presently testing is cumin. I have a thread in the PEM subforum about it. So far, it's been working as a very effective PEM blocker. It's also reduced general symptoms, but it seems less effective at than than when I started. You might give cumin a try to see if it helps you. I'll see if I can write up a list of the things I've tried that affect my ME, both increasing or reducing symptom severity.
     
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  5. Runner5

    Runner5 Senior Member

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    Hey @Wishful have you looked into Gastroparesis? Although falling asleep after 20 minutes isn't a listed symptom, on forums and blogs I found a lot of people saying describing the '20 minute and ZZZzzz' scenario and food sensitivities and allergies after developing Gastroparesis.

    I think I looked at Gastroparesis before and just saw nausea / vomiting and though - naa' not me. But some people don't have those symptoms. Sometimes they don't know they have it at all. It seems to commonly cause fatigue though and at least one article connected CFS to Gastroparesis -- I don't know if that holds water, but for whatever it's worth. It seems that sometimes the stomach can get damaged and it can cause problems with emptying - I had really severe gastritis for a long time, on an off actually, that may have a bacterial or viral base, that could have damaged my stomach.

    I've tried the BCAA fix before because it is listed as the antagonist to L-Tryptophan. For reals though it was too long ago and I don't recall the outcome. I think I would have kept with it if it worked really well. Hmm, but I took BCAA today again just now and will see how it goes and do further experimentation. I am a former runner and BCAA after workouts were my thing along with magnesium.

    I have a wide variety of whole grains from my time as Vegan ;-P I've been scared to eat most of them since realizing my Bob's Red Mill Whole Grain Hot Cereal 7 Grain most definitely caused me issues along with most other grains, although I really miss the whole grain, I did like it and I made some amazing flap jacks out of the whole grain served up with blueberries (now I'm hungry....) I would absolutely love to be able to eat a normal range of food again. Maybe the high fiber content is part of the issue (?)

    I have cut sugar because I'm worried about inflammation. I'm also doing the 5:2 diet which is two days of fasting - 5 days of kinda normal eats (although I'm counting calories and being super careful about everything I eat -- except for that Starbucks Peppermint Mocha the other day *sigh* #living)

    Anyway, we should keep in touch definitely - I have a feeling we have the same or at least very similar issue maybe we can solve this puppy or find a hack to live more normal lives. Hey if you want to start a chat or whatever the forum has to offer that's cool. I would like to know more, age, activity level etc. See if we have anything else in common.
     
  6. Wishful

    Wishful Senior Member

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    Gastroparesis is a new one to me. I think that if I had that, I'd observe other symptoms from it, especially from foods of different types and consistency.

    If cumin works for you, you might be able to run again. Walking was rarely a PEM trigger for me, but arm use was. With cumin I could chainsaw wood for hours, or handsaw it, and split it with a maul, all without PEM. Without the cumin, I would have had severe PEM.

    The BCAA didn't provide anyu reduction in overall symptoms for me; it just blocked the increase 20 minutes after starch. It wasn't really useful for daily living, but I thought it was really interesting science-wise. It showed that tryptophan to kynurenine conversion was involved with my symptoms. For you, I was just wondering if you would experience the same blocking of that 20-minute delayed increase in symptoms. Since you don't react badly to TRP, maybe it won't have that effect for you.

    Sugar has been pretty much out of my diet for a year or two. It gives me insomnia. I do miss sweet things though.

    I tried fasting for five days at the beginning of this. That avoided the flare-ups from food, but didn't make me feel better otherwise. The more recent ketogenic diet made me feel worse.

    I'll write up some data for a personal email reply. Later. No sun today, and my solar panel isn't producing significant power.
     
  7. Runner5

    Runner5 Senior Member

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  8. mariovitali

    mariovitali Senior Member

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    @Runner5

    Please have a Total Bile Acids Test



    @redo


    Allow me to have my take in your Questions

    • Why the disease has increased in prevalence the last fifty years or so.
    Because people use much more medications and the environment is full of toxins. This affects the Liver and its capacity to detoxify.
    • Why women are more prone to get ME/CFS than men.
    Because Testosterone has some protective effect. Mark Davis has previousy discussed this.
    • Why sensory stimuli can make the symptoms so much worse.
    Possibly because of Cortisol elevation
    • Why transient and unrelated stressors like giardiasis and mononucleosis can trigger ME/CFS.
    All of these are stressors to Liver function. Search also about several medications discussed here , vaccinations etc and their potential disruption of Liver function
     
    Last edited: Jan 26, 2018
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  9. Runner5

    Runner5 Senior Member

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    @mariovitali -- would like to have further testing done, thanks for the idea.
     
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  10. Runner5

    Runner5 Senior Member

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    I tried a couple of gluten free pancakes this morning - I'm usually okay with rice and okay with all the ingredients (made them from scratch). It did make me super sick and I had to lay down for two hours and still don't feel well, so yeah maybe it's a carb / starch thing. :-(
     
  11. kelly8

    kelly8 Senior Member

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    Hate to take this off topic but @Runner5 have you tried ever soaking and rinsing your grains before you eat them to see if they are easier to digest? I've had tons of gut issues and mostly avoid grains but have had some success eating them if they are soaked and properly processed. I can't eat gluten at all though.
     
  12. Runner5

    Runner5 Senior Member

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    @kelly8 --- I haven't sprouted my own grains, but have eaten sprouted grain products. I live in a good region that has a lot of health food products. I'm 3 hours south of Seattle Washington and 2 hours west of Portland Oregon -- lots of Vegan and health food items out here. A lot of them are created out here (I'm sipping on a local Kombucha as I type this). I have sprouted brown rice in my pantry at the moment and have tried various gluten free sprouted breads. No difference for me I'm afraid. I've had two Celiac tests so far but negative. Thanks for the thought though --- I'm taking all the help and ideas I can get.
     
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  13. redo

    redo Senior Member

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    Perhaps. I certainly think t-cell activation should be looked into. Tysabri, which wipes out t-cells helps MS patients, and it might help ME patients as well. Who knows. There ought to be a pilot study. By the way, thank you for bringing up various types hypersensitive reactions (Type I, IV). Do you know if there is any data regarding ME/CFS patients and which reactions are most common?

    I get immediate reactions from some foods (itching and tightness in the throat), but with no effects on my ME/CFS symptoms. So, the food reactions I have are just regular allergies.

    Do you know if there are any reliable data backing that up? (I am not disputing that it can happen, I indeed think it's a way to get ME/CFS.)

    I have had it somewhat like that. And my guess is that such remissions happen when "substance X" is below a threshold. And as the disease gets worse it happens more seldom that it is below this threshold.

    Our experiences is somewhat similar, and that's the same conclusion I've reached!
     
  14. redo

    redo Senior Member

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    The (weak) antihistamines have made my symptoms better, but it's far from a cure. What has helped the most is Alimemazine. I began using it to get sleep, and I megadosed for many weeks, and without expecting any such effect, my concentration improved, and some brain fog went away - other improvements as well, but those were most pronounced. I took many times the recommended dose. What I hope is to get Xolair, which is way more powerful and has less side effects. I've done a Google search and found several ME/CFS patients who've had great effects using it.
     
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  15. redo

    redo Senior Member

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    Thank you for the link, Prefect! It may very well be that ME/CFS sufferers of previous centuries were given a neurasthenia diagnosis. However, I stand by my claim that there are more people who are ill with this now than say fifty years ago. If anyone has data to back that up, or refute it, then please post.
     
  16. redo

    redo Senior Member

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    Think of the bullet point list as "what any ME/CFS hypothesis must seek to explain". Whether that be a hypothesis focusing on methylation or XMRV or HPA axis or whatever. Take the XMRV hypothesis for example. It would be a strech to say why such an hypothesis could explain all the four points.

    Don't put too much emphasis on fifty years. It said fifty years or so. So where I was going was "more prevelant now than long ago". If you have a suggestion for an alternative phrasing, then let me know. Here are some:

    "Why we now have many more new incidences than decades ago"
    "Why we have many more incidences in our time than a century ago"

    If you have hard statistics on this, then that would be the best. (The prevalence increases when patients add up, so it's really incidence that's interesting.)

    I've now changed point 2 to "Why ME/CFS affects more women than men".

    Like I wrote earlier, my impression is that the majority of ME/CFS patients haven't been sick following some specific outbreak. Correct me if I am wrong. By far the most common trigger of ME/CFS seems to be mononucleosis, which is more of a regular thing.

    Yes, there is scant data on how Giardia can trigger ME/CFS. But I see the data we have as sound. I have seen the patients that were ill following the outbreak on the news, in the living room of one of them. Everything that were told about the symptoms seemed like a textbook case of ME/CFS. Here's a study on it. Although it's a rare way to get ME/CFS, I think such cases offers a key to understanding the disease.

    This is a side note. But I think of it just like these incidences. Almost no one who have narcolepsy get it following a vaccine. But the fact that it's happened gives us a clue to understanding narcolepsy, which is also a disease where causal mechanisms are unknown. What I am saying is that case reports can give insight.

    I have changed my original post now, so now it reads:

    "The common denominator of extreme stress, giardiasis and mononucleosis is that they all affect our immune system. Could it be that such "triggers" kick-start an immune reaction that never stops?"

    So, these are vastly different triggers, and I am hard pressed to find another common denominator of extreme stress, giardiasis and mononucleosis than having "an effect on the immune system". I'm not sure whether there is sound data to back up the claim that extreme stress can trigger ME/CFS, but I've seen it mentioned many times and take it in good faith.

    You raise a good question, writing "Why is it that the various cold viruses, influenza, etc. have never been convincingly linked to ME or CFS then?" What I think is that mononucleosis is especially good at causing ME/CFS, and with regards to other triggers they only cause it rarely. So rarely that there aren't epidemiological studies, but rather just case reports. That doesn't mean that case reports are invalid, or that other things can't trigger ME/CFS.

    To your last point, "I don't think long term high doses of antihistamines is a safe route to take". Well neither do I, and I don't propose it. I am curious about Xolair though, especially since there are ME/CFS patients writing about how it changed their life.
     
    Last edited: Jan 27, 2018
  17. Wishful

    Wishful Senior Member

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    I haven't seen any data linking ME/CFS and allergies/sensitivities. My reading in PR gives me the impression that type I&III allergies aren't a significant factor, though they might make people more susceptible to other triggers, just by adding extra stress on the body.

    Check the thread: Did you have a vaccination not long before developing ME/CFS? elsewhere in this forum. At present it's 44.7% yes. The thread has links to other data. You'll have to form your own opinion about how valid it might be.

    There are definitely more people today who fit the criteria for ME/CFS than before the criteria were developed... Whether the percentage of population that _actually_ has the disorder has changed over that period is unknown. Answering that question would require a reliable test for ME/CFS that can be also used on old human remains.

    I don't know whether giardia is an issue for ME, but I definitely avoid drinking water from my creek (lots of beavers). Keep your beaver fever to yourself, rodent! :)
     
  18. redo

    redo Senior Member

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    Here's a study linking ME/CFS with increased mast cells (which releases histamine). But I think they would have got more clear results if they looked in the spinal fluid instead of peripheral blood.

    There may be a link between common allergies (which are histamine reactions in front of the blood-brain-barrier) and ME/CFS, but what I was getting at were reactions behind the blood-brain-barrier.

    I do find it intriguing though that IBS, where mast cells play a central pathophysiological role, is a condition some 50 % of ME/CFS sufferers have.

    In our modern world we rarely get infected by Giardia. So that was just mentioned as a possible trigger, underpinned by case studies. It's probably only a tiny fraction of those with ME/CFS who got it following giardiasis.

    Although I am not convinced, I do believe that vaccines can trigger ME/CFS. But I haven't seen studies on PubMed that establish a link. While searching now I found this though, which would indicate that an influenza infection could trigger ME/CFS.

    "Pandemic influenza A (H1N1) infection was associated with a more than two-fold increased risk of CFS/ME. We found no indication of increased risk of CFS/ME after vaccination." https://www.ncbi.nlm.nih.gov/pubmed/26475444
     
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  19. redo

    redo Senior Member

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    I've just read this review of MCAD and found this quote interesting.
    So anything that may strongly activate the immune system can make MCAD worse. This is in like with what's been written about triggers and ME/CFS.
     
  20. Wishful

    Wishful Senior Member

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    I won't comment on MCAD, but this morning I read about something related: post-sepsis syndrome. It creates symptoms similar to ME/CFS. A sepsis researcher said: 'These symptoms are likely a result of the immune system not returning to normal after sepsis.' Sounds like yet another version of ME/CFS. I wonder if post-sepsis researchers and ME/CFS researchers communicate with each other.
     
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