Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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This will cheer you ladies up

Discussion in 'General ME/CFS News' started by Sherby, Nov 24, 2010.

  1. Sherby

    Sherby Sherby

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    http://www.meassociation.org.uk/?p=3075

    Researchers from the University of Hull and the Hull York Medical School tested ten patients with a severe form of the disease.

    They ate dark chocolate for eight weeks, followed by a break and then another variety with little cocoa but which tasted the same.

    They were asked to eat 15g three times a day and not make any other changes to their diet.

    The results were published in Nutrition Journal.

    They reported significant improvement in their wellbeing.

    Can we get it on prescription ?
     
  2. Jim

    Jim Senior Member

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    does anyone know how to buy the specific type of chocolate they are referring to?

    thanks.
     
  3. eric_s

    eric_s Senior Member

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    Lol... you UK people really have a special way of going about things :D (please don't feel offended :angel:;))
    Chocolate and the LP... how is this supposed to cure a disease?
     
  4. Sherby

    Sherby Sherby

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    Chocolate addicts cured by the lightening process. :D
     
  5. camas

    camas Senior Member

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    The chocolate cure has eluded me, and now I know why. I'm unable to limit the dose to 15g three times daily. :D
     
  6. shannah

    shannah Senior Member

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    I've never understood these reports that say chocolate is beneficial for ME/CFS. Even a tiny bit sends me into a major setback.
     
  7. Sherby

    Sherby Sherby

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    I wonder how many of us are lactose intolerant.?
     
  8. Mark

    Mark Former CEO

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    At the risk of standing out of line, I'm not sure this study is necessarily as worthless as some assume...

    Full paper:

    http://www.nutritionj.com/content/pdf/1475-2891-9-55.pdf

    Shannah, has your negative reaction occurred also with high-cocoa liquor, polyphenol-rich, soya+nut+gluten+dairy-free organic dark chocolate, or not?

    The study doesn't seem to have had any healthy controls (a weakness of course, this effect might apply to just about everyone) but instead it compared this type of chocolate with another, low in these factors, and found that the high-polyphenol stuff made people less depressed, less anxious and less Chalder-Fatigued but the low-polyphenol stuff made people worse.

    btw I'm not sure what exactly they were really measuring in terms of physical symptoms and fatigue, but since they used the Chalder Fatigue scale I'd like to suggest that whatever that actually measures should be defined as a new unit, Chalders - as in "god I feel like shit today, I've got at least 12 Chalders and 8 Wessely's" (with Wessely as the new unit for despair).

    Seems to me that it's the fact that the low-polyphenol type actually made them feel worse that is potentially the most striking finding. On any such self-reporting scale, just about any group of patients is likely to report improvement from good quality daily chocolate that they can tolerate and absorb, IMO. Anybody who isn't getting (or isn't able to get) the right regular dose of dark chocolate is likely to be worse off than somebody who does. But actually being made worse in this way, by something like chocolate, might seem at least as notable a finding, although of course not at all unusual or unexpected for us.

    Personally, finding a shop that sells chocolate I can eat and get benefit from did take me a few years (by the way I'm eating it right now, it's made by Plamil Organics of Kent, and it doesn't indicate polyphenol content but it seems to work well for me, and no, I have no stake or interest in the company).

    If the truth behind these results were actually that the true requirement is more detailed than "polyphenol-rich" but also including (for example) "must be soya-free" (and that's an absolute requirement for me by the way, soya-free, if I'm not to get a digestive side-effect that wipes out the neurological benefit), organic and contains no nuts (which both also seem to be important for me, in all food products) then that woulld be what I'd personally expect/guess.

    In fact really what you want to know now is, what chocolate exactly did they test? Comparative testing of various types of chocolate would be a good next step to determine the relative importance of the factors I've just listed, and others. And any other foods that are polyphenol-rich. A nice detailed resultset on those dimensions might actually yield some strong and reproducible data. These sort of sensitivities to the details of foods don't show up with conventional allergy testing, but they should show up with this kind of blinded dietary testing.

    How strong the cohort or experimental design was, I haven't delved into, but what I can say is that the findings do fit with my own experience insofar as some chocolate is good for me, most is bad for me.

    One can easily glance suspiciously at this study and think: what a waste of money, this suggests the cohort might just have been depressed, what is the point of research like this? etc etc. But I am confident from my own experience that a large number of people diagnosed with ME/CFS have complex dietary needs and sensitivities, and specific deficiencies that benefit from specific supplementation, in patterns that vary by individual but also fit broadly into patterns that are characteristic - at least for subtypes of ME/CFS. That's my experience, and the experience of many on this board, at least, so I'm confident that will all be proven in due course (slowly, slowly, yawn), and I hope the illumination of that detail will turn out to be a helpful factor for everyone, though of course it may turn out not to be beneficial for a subset.

    So this research seems to me to be a positive contribution, at least if the effect is replicable, though for sure this is not a breakthrough on the WPI/Light/Pacific Fatigue scale...but we are only the little UK...

    I look forward to receiving my little books full of vouchers from the government to pay towards the cost of specialised chocolate products.
     
  9. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Dark choc has always tasted awful to me and it gives me migraines.. Love milk chocolate though! Not the same for antioxidants but I just get them elsewhere.:D
     
  10. Mark

    Mark Former CEO

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    Couple more of my chocolate musings, as I've been reflecting on this and it's interesting that my reaction to this study has been different from so many others...

    Can't emphasise enough how the dietary requirements for chocolate that I've listed are really rare and hard to find.

    Dark chocolate had proved beneficial to me as part of my ongoing management of depression, but never touched my other symptoms and eventually I confirmed by elimination diet that it was one of many, many foods that were causing worsening of my symptoms (typically the effect seems to be 24-hours time-delayed like PEM, and it covers a vast range of foods in varying degrees, which is why it took years to figure out how it works for me).

    With the help of testing from Allergy UK I eventually discovered that this was due to a soya sensitivity, something I had missed, and that was one of two 'surprises' in the Allergy UK testing that made a big difference to my life: missing pieces in the puzzle I'd pieced together over a decade or so by myself (the other surprise was the strength of the reaction to egg, which means I now avoid that as an ingredient in everything as well).

    Then I starting hunting for chocolate that satisfied all my requirements, and eventually I found one small shop in my city where I can get a variety of products that work for me. It's an organic, health-food, fair-trade, ethical enterprise and they have a fantastic range of products - even there I can only tolerate a very restricted range of the products on offer but I found several foods there that I can now eat at last - or rather food products that I otherwise react badly to - and chocolate is just one example.

    Green+Blacks etc, no chance. The stuff I eat is obscure, even amongst the obscure stuff stocked in this shop in general.

    I don't want to make out like I'm necessarily defending the study, because there may be quite a bit to question about it and I haven't got much further than the abstract really. How much money went on producing these findings I don't know, but not an awful lot I hope - it looks like it ought to have been a fairly cheap study.

    Just thought I'd take the opportunity to dump some of my experience about chocolate, really, because like a lot of things with me it's taken several years and some pretty hard work to solve this problem for me, and it might just be helpful to someone who's able to find that there's chocolate they can eat out there, after all.

    I'd love to hear from somebody else who's found some chocolate they can eat. If I'm the only one, maybe I should get my coat...:worried: And yet... if that were true, then "99% of ME/CFS patients can't eat any kind of chocolate" would be an observation worth exploring and following up on somehow, I would have thought...
     
  11. Mark

    Mark Former CEO

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    PPS:

    And I should note that like the researchers I'm only talking about a small but notieceable benefit here, and one that I would interpret as a need to top up levels of something I'm deficient in or unable to absorb. One small part of a much bigger picture in terms of managing multiple subtle deficiencies and sensitivities.

    The part that I don't get is, why this study claims it's the first of its kind when apparently 3 years ago Prof Atkin reported exactly the same thing. The first one's called a pilot study in the first BBC report, but I can't see why something so apparently straightforward would take 3 years to expand into a very small actual study...let alone why the pilot study would be considered news in the UK when Lo/Alter's "confirmation of WPI findings" wasn't...but that's another story...
     
  12. SickOfSickness

    SickOfSickness Senior Member

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    Chocolate in any form does improve my life, making me more mentally okay for hours. Also the natural stimulant in tea (or the caffeine, or both). Though they can cause issues with insomnia.

    I think I have problems with sugar however.

    However I am not at all surprised that others say it doesn't help, and am shocked at the study results. In other words, it works for me but I have always figured it would not work for most. I am extremely sensitive and have ADHD which is normally treated with stimulants. (And CFS/ME.)
     
  13. Mark

    Mark Former CEO

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    Sorry if I'm getting like a stuck record now, but I don't have a hard time believing that chocolate is, on balance, harmful to most people but that the successful chocolate studied here could work for most. To anybody who's saying "I can't tolerate dark chocolate at all" and who's got no further than the likes of Green & Blacks in their search for a chocolate bar they can tolerate, the problem is that they haven't looked hard enough, according to my experience at least. Remember that one half of the study's results confirms that one of the chocolates they studied was harmful. The fact that one was white and one was dark is unbelievably weak evidence even to say this means that dark is better than white for us...even if there had been more than a handful of test subjects the most you can really try to say is "some choc good, some choc bad" - in a barely-statistically-significant-if-at-all kind of way...

    Spotted towards the end of the study that Nestle were involved in this, and it seems they provided the successful chocolate, which appears to be experimental...so maybe this is all just a money thing, some new product they're preparing to launch...I'd certainly be hoping Nestle paid for the study, anyway - does anyone know where the money came from for this?
     
  14. eric_s

    eric_s Senior Member

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    I don't doubt that chocolate can make you feel better. I hardly ever eat it because i think it's better not to eat too much sugar, for overall health.
    My "problem" with this study is that i'm not looking for something that despite there's something major wrong somewhere inside of me will give me something that will make me feel a bit better but will leave me in this state for ever.
    I don't think we need "palliative" care (is this the right word for us? i mean something that will only improve how you feel while you're still stuck or going down), we need them to find what's wrong and find how to fix it. So if resources are so limited as they seem to be, i think they should be spent in that direction.
    But of course it's good if you've found something that helps you.
     
  15. Sherby

    Sherby Sherby

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    Thanks for your link Mark. So there is more to chocolate than meets the eye.
     
  16. Mark

    Mark Former CEO

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    I know that a lot of people have that point of view, and I understand that argument, but I do strongly disagree, I think it's a bad mistake to think about things that way, even though it's a common way to think.

    Of course it should be the top priority to find our what ME/CFS really is, how it works, what is wrong. To try to understand the disease, so that you can get to the cause. Then - maybe - you will find it is possible to permanently "fix" or "cure" the problem, and hopefully you will at least be able to stop more people getting it in future.

    Also I agree that if we are looking at certain specific research budgets, and those budgets are very small, then while those budgets are far too small, there is an argument to concentrate all that money on fundamental research like you say.

    However...

    For a start we don't know where the money came from for this study. It didn't come from the MRC for sure, and it didn't come from the MEA, they just reported the study. So it depends where the money came from, whether what you are saying applies. Nestle were involved in the study. If they funded some or all of it, and that money is all new money, then the argument does not apply.

    Then, I'm afraid, if we are realistic, as we should be, we have to consider: there are conditions that are in practice incurable, and there are even perhaps conditions that are in principle incurable. Until we know much more about exactly what "ME/CFS" is, we just don't know for sure whether it will ever be possible or realistic to find a cure. A retrovirus is actually a pretty classic examples of this. If it has overwritten sections of your DNA, how do you propose to get that DNA back? Main contender for an answer that I have heard, is to engineer nano-machines that are programmed to edit the DNA directly. But solutions like that might not happen this century. The sorts of problems that need to be solved in order to talk about cures for retroviral infections - well, some of them are very hard problems indeed. These are harsh truths, but we have to be realistic: these things are possible.

    But this case doesn't have to mean there is no hope though, not at all. It's possible something is ultimately incurable but you may be able recover 99% functionality, or be able to be perfectly OK so long as you take treatment Y once a year, or it's possible that something is not curable but you can get 100% better so long as you avoid toxin Z, and we all now decide to phase out toxin Z...

    Or: suppose it can be cured, but it will take 20 years to find a cure. Do you want to just sit and wait for that cure, and research only that, or do you want to spend 10% of the money looking for effective pain relief, if there's a chance you can answer that question in 2 or 3 years? I think most people would rather wait 22 years and have no pain during that time, rather than wait for only 20 years in chronic pain.

    Of course these are all abstract examples, because we just never know how long an unknown problem will take to solve. Even more importantly, we just don't know what kind of research might lead to a breakthrough - it could come from almost anywhere. How do you want to understand the condition; how will you discover clues? Maybe the big clue that helps us understand what is happening could come from a finding like this! Suppose somebody reads this study and says "aha! That gives me an idea!" and they put it together with some other piece of information and unlock the puzzle. You just can't predict what might be important.

    So I agree that it's most important to try to understand the illness at a fundamental level, but I think the intelligent approach is to cast the net as wide as you can, try many different approaches, gather as much information as possible, and increase your chances of success that way. I also think it's intelligent to look at things that are helpful to some people, and to explore those things and find out why they help. That is sure to lead to more information about the condition, and that can easily be how you work towards a complete understanding and a complete cure. Pain relief is worth researching as well. It is not an "all or nothing" approach that we need.

    Finally, coming back to this particular study. OK: it's pretty thin, pretty weak. But it is scientific evidence of people getting worse after eating the white chocolate, for example: that can become evidence to prove that there is something physically wrong. It is scientific evidence that here is something that helps, a little bit; next questions: why does it help? and can we find 10 more things that help just a little bit each? Can a powerful 'flavinoid pill' have a more powerful effect? All of this can be useful.

    I don't want to have to defend that this particular study was worth doing; it certainly doesn't seem like it was worth spending very much money on, but who knows? I just think that we need as much good, solid research as we can get, from as wide a range of sources as we can get, looking at lots of different angles, including exploring what makes somebody feel better or worse. Then maybe the whole picture will come together, one day...
     
    RogerBlack likes this.
  17. L'engle

    L'engle moogle

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    I drink cocoa most days because it's a good source of potassium and iron. It's a good balance for the salt intake. mix it in a drink with stevia, so the fat and sugar content are low. It tastes good. Not a cure but one element of my diet that helps keep a nutrient balance..
     
  18. eric_s

    eric_s Senior Member

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    Ok, the fact that some people got worse from white chocolate sounds interesting (i haven't read the study though) and could lead to more discoveries. I don't think it directly triggers the disease though, but i have no idea. But the fact that chocolate has some effect on the nervous system, making people feel good, is nothing new. So i wouldn't need a study to prove that. It has been proven in many studies before, as far as i know, in general and probably also for certain conditions. And there are many other things that can make people feel better and are for free. But they don't get people with a physical illness out of bed or back to work again.

    You're right that if that money would never have been available for other research into CFS it was not lost and so it did not hurt us. I was not looking at things in such an exact way, i was just making a comment because that study reminded me of the LP study.

    Me personally, i see things a bit more simple. I can't and don't want to go on like that. And i guess that's true for probably a 7 digit figure of people. So find out what CFS is and give us a treatment for the illness, not symptom relief of a degree that will not seriously change the life you are able to live. If you can stop the illness, the symptoms will be gone and you don't need any treatment for symptoms anymore, so for me it's clear where the main focus of research must be. And i'll never accept for an answer that CFS can't be cured (i would call what people infected with HIV get a cure). If we can get something that is similarily effective that's good enough for me for the moment.
    What makes me feel bad is that CFS keeps me from doing and having what i want to do/want to have and what everybody else can do or have daily. And no chocolate, pain killer, whatever, can change that.

    I think what made this article ridiculous for me (not the fact that it was posted! it's interesting) is the point in time where i read about it. Right now there's quite a good chance we're not far away from knowing what CFS really is and finding a treatment for it and people want to give us chocolate to make us feel better. That just seemed ridiculous to me. At this moment in time there's only one thing i care about and that is wheter it is XMRV or not. And i've been waiting for that answer for months, every day. If there's something that can make me feel a bit better but not change the mechanism of the disease, at this moment, i just really don't care about that at all.
    The idea to give chocolate to people who have a retrovirus (if that's really the case) just sounded absurd to me. In a way it's a good picture for how we have been treated up to now.
     
  19. Mark

    Mark Former CEO

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    I guess that's why I'm going on about it so much - I suppose I am just a little bit obsessed by the whole subject of chocolate in general, I have been for quite some time. There are just so many widespread silly attitudes about it, I always have this feeling that when you say the word chocolate, people's brains start to fall out...I guess that's what's happened to me today... :)

    I think it's because of the history of how it's been produced, packaged and marketed - there's so much baggage and so many misconceptions. Like the way it has been marketed as a "naughty", "luxury" product, so that we should enjoy feeling a little bit guilty about eating it. That's so deeply programmed into us. Supposedly all because it's really fattening...and yet it's the added milk that's been the unheathily fattening thing really. People seem to fnd it really strange that I see it as a super-healthy food, but I find it weird that so many people don't...anti-inflammatory and anti-depressant properties, found to lower blood pressure...yet all we ever think about is the fat content...as if fat is fat is fat is bad - well for me, at least, bread, and packaged sandwiches, seem to be the most fattening foods, but people don't go on about them...

    Sheesh, I'm just going on and on and on about the stuff, don't know where all this came from, I'm sorry about this folks! But what about this, from wikipedia:

    "In the New World, chocolate was consumed in a bitter, spicy drink called xocoatl, and was often flavored with vanilla, chili pepper, and achiote (known today as annatto).[11] Xocoatl was believed to fight fatigue, a belief that is probably attributable to the theobromine content."

    "South American and European cultures have used cocoa to treat diarrhea for hundreds of years.[14]"

    "Dark chocolate has been promoted for its health benefits, as it seems to possess substantial amount of antioxidants that reduce the formation of free radicals."

    "Dark chocolate, with its high cocoa content, is a rich source of epicatechin and gallic acid, which are thought to possess cardioprotective properties. Dark chocolate has also been said to reduce the possibility of a heart attack when consumed regularly in small amounts.[27]"

    " Cocoa or dark chocolate benefits the circulatory system.[50] Other beneficial effects suggested include anticancer, brain stimulator, cough preventor and antidiarrhoeal effects.[51] An aphrodisiac effect is yet unproven."

    Oh...but of course yes, it's true, there are downsides: it's energy-rich so it might be fattening...depending how much fat, sugar and milk is mixed back into it by the manufacturer of course...and apparently there's a slight concern of mild lead poisoning from some types...


    I really think I've said near enough everything I have to say on the subject of chocolate now! :) Other than to mention the colonialist history of course, and to promote Fair Trade chocolate for anyone here who can find one they can eat. So I'll finish with one last famous finding, in tune with the thread title, and just add my heartfelt sympathies to anyone who can't find any chocolate product they can tolerate - I hope some of you can manage to find an allergen-free chocolate that you can enjoy. Failing that...there's always carob, which also rocks...


    A study reported by the BBC indicated that melting chocolate in one's mouth produced an increase in brain activity and heart rate that was more intense than that associated with passionate kissing, and also lasted four times as long after the activity had ended.[54]
     
  20. IamME

    IamME Too sick for an identity

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    That's the worst! Dark chocolate is a potent migraine inducer. I didn't have migraine before ME, but it's pretty common as also has a connection to cardiac abnormality. Chocolate also relaxes the blood vessels, potentially making OI worse.

    "On any such self-reporting scale, just about any group of patients is likely to report improvement from good quality daily chocolate"

    No they're not, see above.

    "If the truth behind these results were actually that the true requirement is more detailed than "polyphenol-rich" but also including (for example) "must be soya-free""

    Well I think it's pretty easy to tell if you're reacting to soya or not, as long as you're already experimenting with diet. And if you're not experimenting with diet there's less likelihood of consuming soya, unless you're really careless about diet.

    "A nice detailed resultset on those dimensions might actually yield some strong and reproducible data."

    No data from this sort of stuff can ever be strong because it's frivolous research based at best on faulty premise (we've just gotten a bit toxic - like drunk people) that traduces the gravity of the subject in every way imaginable. (If they ever start getting positive results for "treating" leukemia, AIDS and lupus with choc I might change my mind). There is just simply no way someone with genuine severe ME can be resurrected from bedbound to working/school by a few polyphenols, although people with unexplained fatigue/PVF maybe. Remember this is a serious multi-systemic chronic relapsing neuro-immune disease.


    "One can easily glance suspiciously at this study and think"

    One of the recurring themes in ME is that we don't seem to be allowed to call a spade a spade. If something looks like bobbins in the world of ME it probably is, and then some!


    ": what a waste of money, this suggests the cohort might just have been depressed, what is the point of research like this? etc etc. But I am confident from my own experience that a large number of people diagnosed with ME/CFS have complex dietary needs and sensitivities"

    There's no doubt of that, but that's a million miles away from suggesting some "super food" can rehabilitate. Are people bedbound because they've got a food intolerance(s)? The resounding answer, re M.E. is no, we know this from decades of study and clinical observation.

    If the answer was as simple as giving pwME a bunch of plant antioxidants we wouldn't need WPI and probably wouldn't be here having this discussion.

    This goes for most if not everyone with ME -- I use bedbound because some of the people in this study IIRC, were reportedly severely affected. I can gaurentee you that "severe" cases in the these sort of studies always turn out to have few, undistinguished symptoms and signs and better match severe "fatigue".

    If these researchers were serious about ME they'd know about food intolerances and probably be looking in the first instance at supplementation rather that whole chocolate. But then that wouldn't shift boxes of chocolate.

    "So this research seems to me to be a positive contribution, at least if the effect is replicable, though for sure this is not a breakthrough on the WPI/Light/Pacific Fatigue scale...but we are only the little UK..."

    No it's not really a positive contribution, because at best all this will do is galvanise study in micromanagement through diet rather than bring in the heavy hitters (immunotherapy, virology, neurology, cytopathology, cardiology etc) that are depserately needed to get to the root of the disease and understand it's many complicated sequelae. And there's no doubt that it will have contributed to the trivialisation of ME as "CFS", the "chronic tiredness" illness in the UK, and helped put off more serious research. As I say no other serious diseases are treated like this.

    Then of course I surely don't need to list the social consequences of this "news".

    ANd I'd rather this stuff wasn't promoted by repeating it or "marvelling" at it like the MEA have done. Not every bit of junk is news worthy.
     

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