After a little more web research into Dark Chocolate Science, I've come to the conclusion that all the complaining about this chocolate research has more to do with prejudice about nutrition science (which all the other severe illnesses benefit from), and ignorance of the myriad of extremely well-evidenced health benefits of dark chocolate, than it has to do with ignorance and prejudice about ME/CFS on the part of a team of nutritionists who wondered whether ME/CFS might get similar benefits from dark chocolate to those found for heart disease, AIDS, obesity and a range of other conditions, and set out to test it unaware that they would only be widely criticised by patients for not being virologists.
So I'll spend a little time responding to IAmME's harsh criticism of me for suggesting this research may not be worthless...
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
Thanks for reporting some detail of the potential downsides to dark chocolate, I was expecting to find more of that on wikipedia but there was almost nothing mentioned. It's not suprising if there's another side to the story and I'm very interested to hear it.
So a link to migraines may be a key problem for those who can't tolerate chocolate: that makes sense I guess; migraines have never really been a major feature for me, apart from a period of a year or two around onset and a fair few splitting headaches that come and go from time to time. Btw there's been a recent genetic breakthrough re: migraines I think, which may ultimately prove relevant to all this detail.
To be as clear as I can: I'm obviously not intending to say "everyone can eat chocolate, it's good for all of us", I was only wanting to relate my experience of having had to go off chocolate for years and then later finding that it was the other things in the chocolate that were the problem and not the chocolate itself. I just thought that since chocolate is so potentially beneficial, not to mention enjoyable, I should describe my experience in case it could help somebody out of the same misconception I laboured under for a few years. Being able to eat chocolate again is such a boon for me, especially since there are only 5 or 6 foods that I know are safe for me and my diet is necessarily so narrow. But I'm sure there are some people who just can't do chocolate at all, even when it's free from soy lecithin.
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.
Well I didn't figure out my soya sensitivity for years, it was one of 2 or 3 sensitivities that I had missed. Only after I'd progressed bit by bit by eliminating other things did I begin to suspect soya, but I still couldn't confirm the effect by experimentation, it was on a list of 4 or 5 suspects. Only Allergy UK's testing finally nailed those last few details for me.
And I'm not sure why you would say there's little likelihood of consuming soya unless you're experimenting with diet, because soya is in absolutely masses of stuff; eliminating soya eliminated more than half the stuff left in the shops that I could safely eat. Pretty much all the veggie products I was eating had to go.
"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.
There's so much in this paragraph that I have to question. I was suggesting that comparative detailed studies of specific chocolate ingredients, and comparative studies of other foods, could reveal patterns of food intolerances that are specific to ME. Why can no such data ever be strong? Why is that a frivolous question to explore? The implication would seem to be that you must therefore think that any research on nutrition/dietary effects is frivolous. Why? It's well known that we have lots of food and other intolerances, but is there actually any good research documenting and proving that? Those intolerances are generally not accepted by medicine in the UK as genuine because they are very often not actual allergies, as in my case. This is a medically unaccepted phenomenon, widespread in us - what is wrong with actually proving that and exploring any patterns?
Then you say the research is based on a false premise that we've just gotten a bit toxic. What? Where is that coming from? Unless it's in the paper and I missed it, it sounds like that's just your guess at what they were theorising. But I see no reason to conclude that these researchers had any particular theory about what ME/CFS is.
"If they ever start getting positive results for "treating" leukemia, AIDS and lupus with choc I might change my mind"
Regarding research into the effects of different foods on other serious illnesses, it took me about 10 seconds to find this one in a PubMed search on "AIDS chocolate":
http://www.ncbi.nlm.nih.gov/pubmed/1367748
"A sodium hydroxide extract from cacao husk inhibited the cytopathic effect of human immunodeficiency virus type 1 (HIV-1) against HTLV-1-transformed T-cell lines MT-2 and MT-4. It also inhibited syncytium formation between HIV-infected and uninfected lymphoblastoid T-cell line, MOLT-4."
How will that do? Is anybody feeling any less singled out and trivialised by chocolate research yet?
I bet there is absolutely stacks more where that came from. Stacks of it, for illnesses that are properly researched. The newspapers are full of "this food can protect against that" all the time! Why do you think researchers do all those studies about the effects of certain foods? Because they are trying to get clues to how all those medical problems work, at the same time as researching dietary advice that can help with those conditions. Which is all totally sensible.
I almost feel like I could pretty much rest my whole case about how misguided the kneejerk reaction against this study has been with the above paper. Sure, it's a more weighty academic paper than the one we're discussing, which came from a nutrition journal. But don't blame journals for writing about us just because the major ones don't, it's hardly fair on the people who are at least choosing to do
something.
"There is just simply no way someone with genuine severe ME can be resurrected from bedbound to working/school by a few polyphenols"
...and whoever claimed they can be? Not me and not the research paper. We both observed a small beneficial effect. It is a clue, a piece in the puzzle, a bit of evidence. If you're going to pounce on anybody who produces such bits of evidence, the jigsaw is going to take a very long time...
"Remember this is a serious multi-systemic chronic relapsing neuro-immune disease"
A bit sharp of you to ask me to remember that point, I am hardly likely to forget any of those aspects since I have it myself. I don't need you to remind me thanks. What does the "relapsing" part suggest to you? Do you think the relapses and remissions happen spontaneously for no reason, or do they have triggers? If they have causes, have you ever tried or succeeded in identifying any of the triggers yourself?
"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!"
Of course you're allowed to call it a spade if that's what you see. Others are allowed to call it as they see it too. Most people have called this one as bobbins, nobody stopped them. But it seems that you want a unanimous verdict, you want to be allowed to call it a spade and not have any contrary response made to that.
"...that's a million miles away from suggesting some "super food" can rehabilitate..."
Again, nobody has suggested this and I am not doing so. All anybody's said is that the right kind of chocolate can have positive effects for many of us. That will be all the anti-inflammatories and anti-oxidants and flavinoids and so forth, presumably. I think we can all agree that it's not a
huge surpriseif naturally-occurring anti-inflammatories are helpful against an illness characterised by chronic inflammation.Nobody mentioned rehabilitation though.
"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."
Correct, but again, nobody was arguing they were.
"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. "
And nobody was saying that chocolate or plant antioxidants are "the answer" either.
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".
I think these people were all Fukuda criteria. Even if they weren't severe enough to include the group of patients you consider to define "ME", these other Fukuda patients do NOT just have "fatigue", and every one of us knows how disgraceful that insult is so there's no excuse for levelling it at other patients because you guess they aren't as sick as you.
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.
You've checked, presumably, to see what else these researchers have been looking at previously and what angle they really are coming at this from? Are they ME/CFS researchers, chocolate researchers, nutritionists, or a mixture? If they are just nutritionists, is the idea that nutritionists ought not to research ME/CFS?
ETA: Also I don't see what is so much more noble about shifting boxes of supplements or shifting packets of pills than shifting boxes of chocolates. The fact of being dieticians might suggest why their focus is on foods rather than supplements. And there is plenty of reason to suspect that natural foods that we've evolved alongside might be a preferable way to fix dietary deficiencies than breaking down all the consituent ingredients of foods, trying to work out which ones are giving the most benefits, re-mixing and re-manufacturing the ones you want, making them available in pill form, and hoping the result is still as bio-available as the natural food was in the first place. I reckon they must have had some clue about food intolerances as well, or they wouldn't have managed to get a mix out of Nestle that the test subjects could tolerate. btw the negative effect of the white chocolate is most probably lactose intolerance I suppose.
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.
I think you see it as an either/or though: a programme of study exploring micromanagement through diet does not have to stop all those other heavy hitters getting involved in ME/CFS research. And actually, it's not all just about micromanagement at all, as I've tried really quite hard to explain, it's also about getting clues that help you understand the nature of the condition.
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.
There is ample doubt as far as I'm concerned. I really doubt that a tiny study like this one has the power to trivialise anything, and I don't think that more heavyweight research is less likely to happen as a result of this study taking place. If some people do see the whole thing as trivial - and I honestly think the reason people are doing that is because of this weird giggly reaction to the word "chocolate" some people have - then that's a great shame but that doesn't mean that nutrition or dietetics or the medicinal properties of chocolate are trivial issues.
As I say no other serious diseases are treated like this.
Of course we are treated differently to other serious diseases and that's scandalous. And indeed other serious diseases get vastly more serious research than us (it would be hard not to). For example, they get vastly more nutritional research...
Google Search: Nutrition Journal AIDS: 308,000 results:
Google Search: Nutrition Journal AIDS Chocolate: 69,000 results:
Google Search: Nutrition Journal CFS Chocolate: 5,000 results:
In this latter search of course, reports about this particular study dominate the first page at least. And in there, I'll concede, there is one rotten interpretation of the news as "Chocolate for Treating CFS" from about.com. All the other links have it reasonably right though: "may ease symptoms".
Just google around nutritional research, chocolate, and serious medical conditions and there is
masses of serious research into nutrition and serious medical conditions...just one more I'll pick out now:
http://www.ajcn.org/content/88/1/58.abstract
Just interesting to me really because they are recommending acute ingestion of dark chocolate and liquid cocoa for overweight adults - improved endothelial function and lowered blood pressure - especially in sugar-free chocolate preparations - so it echoes my earlier points about how muddled the popular conception of chocolate as a supposedly 'bad', 'naughty', 'fattening' food really is - dark chocolate is found here to be beneficial for overweight adults!!
Then of course I surely don't need to list the social consequences of this "news".
I'm afraid I don't really know what you mean but if you mean that people are going to read this and start suggesting to dark chocolate to people with ME/CFS, maybe buy them bars of dark chocolate for Christmas, then that's all to the good for those who can tolerate it and don't get the migraine reaction because dark chocolate can ease some of the symptoms of ME/CFS, and to me that seems like a good thing for people to know - although personally, I knew it already purely from my own experience, though it took me more than a decade to get to a chocolate that didn't worsen my condition due to the soya sensitivity effect, and I also knew that it's very hard to find stuff free from soy lecithin and I need something using sunflower lecithin.
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.
And the MEA didn't 'marvel' at it whatsoever!
The story was in the Daily Telegraph (and doubtless in other papers too). The MEA posted the story verbatim on their site, just as I'm sure many other ME sites have done. And then there are (currently) 5 posts about it on that page, all of them critical.
Remind yourself of the MEA link here please:
http://www.meassociation.org.uk/?p=3075
and then feel free to explain which bit is "marvelling" at the study...if you can't find one, please ponder the accuracy or otherwise of your characterisation of the MEA there.
The other point I would make is that if it's so hard to find/source "good" chocolate then that's another reason why it's not such a great idea. And I'm sorry but saying very sick people should go on some ridiculous psuedo spiritual mythic quest to find the rarest most hard to get "perfect" chocolate just *in case* it has some miraculous result is daft. Some people don't even like chocolate! The argument that food intolerances are just due to the wrong variety is nonsense also.
Wow! So if it can be hard to track down a good source then it's not a good idea to try. And just because somebody is urging you that they've found something they think might ease your symptoms, based on their 15-year experience, isn't a good reason to try it. Much better to re-characterise the claimed easing of symptoms as a claim to a "miraculous result", ignore their attempt to save you the trouble of the long and difficult process they went through before figuring out the complex answers, take the opportunity to sound off about a "pseudo spiritual mythic quest" (WTF??!!), call it all nonsense, and carry on waiting for the government to save you.
You seem to know so much more about all this through not trying than I learned through long and expensive years of frustrating experimentation, I don't know why I bothered. Still, at least I no longer sleep 14 hours a day, and the pain is no longer unrelenting, so I guess it wasn't a total waste.
It would make much more sense, to put research money into looking at the already identified detox pathway problems with glutathione, B12 etc before looking at superfoods. After you've looked at the fundamental and all important immune, metabolic and neurological problems of course.
There's a long list of overdue research backed up there, as we all know. Suggest you email the nutritionists and explain why they shouldn't expand on their research into ME/CFS until all this other stuff has been done. Explain that ME/CFS patients aren't interested in "relieving their symptoms" (pah!) - they want a total cure or nothing, and they should wait until ME/CFS has been solved and cured before exploring how the symptoms can be relieved.
As you know, all that stuff about detox pathway problems, glutathione and B12 isn't accepted by the UK health authorities, and you can't get treatment that way on the NHS. I presume you've tried Dr Myhill though, since she treats ME/CFS based on all that science? Now
that year really
did see miraculous results, for me. Being able to eat chocolate again is trivial in comparison (although as a tool to stave off depression I'm glad it's back in my armoury), but I've long known that it helps take the edge off most of the problems I'm still left with, so whatever anybody else thinks, I still think it's very nice to see the effect confirmed in research.
. I have some headache every now and then, like right now for example, but usually i exactly know why that is, i get it the day after pushing myself too hard. On those days i especially love it, if somebody then tells me it's the weather... as i never have it, when i stay at home...
