..investigation of nutritional intake & supplement use in Australians with [ME/CFS] .. implications on health-related QOL, 2021, Weigel et al

Discussion in 'ME/CFS research' started by Andy, Jul 16, 2021.

  1. Andy

    Andy Committee Member

    Hampshire, UK
    Full title: A preliminary investigation of nutritional intake and supplement use in Australians with myalgic encephalomyelitis/chronic fatigue syndrome and the implications on health-related quality of life

    Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, multisystem illness without a currently recognized pharmacological treatment. Dietary supplementation and modification have been posited as potential management strategies; however, their efficacy is controversial.

    Objective: This study aimed to assess the nutritional intake and supplement use of Australian ME/CFS patients and the perceived effect on health-related quality of life (HRQoL) for the first time in an Australian patient population.

    Design: Between February 2019 and January 2020, ME/CFS patients across Australia volunteered in this cross-sectional study in response to online advertisements. Eligible respondents were invited to complete three online self-administered questionnaires investigating their supplement use, nutritional intake, and HRQoL. The study participants’ supplement use and nutritional intake were summarized and compared with the population data returned from the Australian Health Survey (2011–2012). Multiple linear regression analysis was also performed to determine the effect of participants’ supplement use and nutrient intake on HRQoL.

    Results: Twenty-four eligible ME/CFS patients (54.2% meeting the International Consensus Criteria, 79.2% female, mean age = 43.4 ± 10.5 years) completed the online questionnaires. Supplement use was highly prevalent among the study sample (87.5%) and considerably more common when compared with population data (31.9%). Daily total fats and caffeine intakes were significantly higher among ME/CFS patients when compared with the Australian population (P = 0.009 and P = 0.033, respectively), whereas daily intakes of total carbohydrates and alcohol were significantly lower (both P < 0.001). No consistent trends between nutrition and supplement use with patients’ HRQoL could be identified.

    Conclusions: The daily diet and supplement use of ME/CFS patients appear to vary considerably from those of the general Australian population. Although the role of nutritional intake and supplement use on ME/CFS patients’ HRQoL remains unclear, dietary changes and the use of supplements appear to be of value to ME/CFS patients.

    Open access, https://foodandnutritionresearch.net/index.php/fnr/article/view/5730/13676
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  2. Midnattsol

    Midnattsol Moderator Staff Member

    Thanks for posting Andy.

    I sort of wanted to stop reading at 24 participants, but... Sigh. I don't think this tells us a lot.

    The pwME, based on the summary tables in the article, seem to include more healthy foods in their diet than the comparison group, but also more supplements (I would have liked to see a more thorough breakdown of vitamins/minerals from supplements, not just for folate). I wonder why not all B vitamins are included, B1 has been mentioned a lot when it comes to energy deficiency I feel. I guess it's a typo on the B12 unit as it is generally measured in mcg, not mg. I also find it weird the B12 values are relatively low, it is a common supplement alone, and often included in multivitamins.

    The SD value for energy intake for the comparison group is huge. Energy intake without energy requirement is rather difficult to use for anything, but calculating energy requirements for pwME using a formula could be useless as many/all of the formulas commonly used are terrible even for healthy people.

    I would have liked to see how much each of the macronutrients contributed to total energy intake in percentage, not just grams of intake.

    Not least, I would have liked some plots, preferably violin and/or scatterplots not just means.
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  3. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Good concept in general to study this. Not being a scientist or medical professional, I defer to @Midnattsol who knows more about this, and said there are deficiencies in the study. Could be interesting to do more in-depth investigation.

    Good nutrition, if pwME can afford it, and some supplements if pwME can afford them at least help maintain some health and function. However, there is a significant percentage of food insecurity in the ME population.

    It seems use of more than just rudimentary supplements causes medical professionals concern. PwME may use a great many supplements to try and improve their health and function. I don't know if this so-called "overuse" has a psychiatric label, but it wouldn't be surprising. The use of these pills may be seen as just a part of the faulty thinking causing ME.

    What many health care providers don't seem to understand is the absolute desperation of pwME to have even a 5% improvement. Of course, the belief that ME is not physiological sets some health care providers and pwME worlds apart.

    I would hazard a guess many pwME spend a great deal of time trying to find things that help. Along with the extra costs of supplements or trials of some, along with research of same, causes extra burdens a number in our community can ill afford.
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  4. Creekside

    Creekside Senior Member (Voting Rights)

    Desperation? No, the psychiatrists would probably come up with a fancier and even less meaningful term.
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  5. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    I find it strange that the abstract specifically mentions fats and carbohydrates in the results section :

    Daily total fats and caffeine intakes were significantly higher among ME/CFS patients when compared with the Australian population (P = 0.009 and P = 0.033, respectively), whereas daily intakes of total carbohydrates and alcohol were significantly lower (both P < 0.001). No consistent trends between nutrition and supplement use with patients’ HRQoL could be identified.

    but doesn't mention protein intake. I see that figures have been given for this in some tables, but why not mention it even if only to say that protein intake was lower/the same/higher as the controls?

    There are three macronutrients in the human diet - fats, carbs and protein. Why mention two of them but not the third? This is a weird omission in my opinion.
  6. Wonko

    Wonko Senior Member (Voting Rights)

    TBH the very brief description makes it sounds like the pwME they surveyed were more likely to be on low carb or even keto than the general population sampled.

    Which is perfectly possible.

    Of course if they had sampled other groups (not pwME) against the general population they sampled then the same or more pronounced findings along the same lines may have been made.

    It does look as if Australian pwME don't eat as much ice cream as the sampled population of Australians anyway.
  7. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Frustrating that the sample size, potential of selection bias and the use of self reported questionnaires rather than a prospective food diary limit what we can conclude.

    I was surprised that the ME respondents reported higher than ‘normal’ caffeine consumption, given this is not uncommonly reported as an intolerance on social media sites. I don’t know if it will be relevant or not as to whether these people were still working or not. My experience is probably atypical as I have never regularly drunk tea or coffee, even pre-onset only ever using them for the ‘drug’ effect. However, post onset for many years I did consciously use caffeinated sugar drinks as a stimulant, first thing in the morning when I still was able to work 9 to 5, and then later when I had a holiday let business to get me through change over days. It was only some years after this that I developed a conspicuous caffeine intolerance.

    It is a shame that the authors do not make clearer any information on how long post onset the subjects were. My experience has been that, given lack of information on the subject, and despite having tried several diets to treat my ME, I was some ten years into the condition before I noticed my gluten intolerance which I suspect was present from the onset of my ME. But also my food intolerances have changed over time, with such as my gluten intolerance worsening, for example for many years I could get away with rye bread, until, after wrongly blaming my local whole foods shop for mis selling a rye loaf as totally wheat free, I became as intolerant to the form of gluten in rye as in wheat. The chemical make up of the two is apparently different and my godson who trained as a Konditor (confectioner/pastry chef) tried to explain it to me, but failed, possibly because we failed to adequately translate the relevant terms. So sad that I had to give up on the Schwarzbrot, than anyone visiting from Germany knew to bring me. Over time other food intolerances have emerged.

    You might also expect supplements use to change over time in ME. For the first year post onset I did not use any supplements, but then when I entered the desperately trying everything and anything stage my supplement use skyrocketed. However, once I had to stop working, I stopped totally taking supplements because of cost issues. However, I am not sure that any I tried had a consistent ongoing effect, other than B12 injections which are necessary to stop me going into a measurable deficit. Now I only have generic multivitamins on an erratic basis to try to compensate for my poor diet, as I often need to rely on commercial ready meals.
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  8. Trish

    Trish Moderator Staff Member

    This looks to me completely useless. For an online study promoted via social media, only getting 24 respondents is pathetic. Tiny self selecting samples are useless as indicators of population behaviour. As has been suggested, the results suggest at least some were experimenting with keto diets, plus taking extra supplements. Perhaps some were part of a FB keto group. Great way to skew the sample!
  9. Wyva

    Wyva Senior Member (Voting Rights)

    Budapest, Hungary
    I'm not sure if this is due to me being mild or not, but I don't have any caffeine intolerance (alcohol intolerance is the only one I have due to ME/CFS) and I definitely use coffee all day to keep me running. It doesn't always work and even when it works, it doesn't resolve the problem, only helps a bit but still, I don't know where I would be without it in the morning. However, me being mild might play a role in this, I really don't know. :emoji_shrug:

    I posted a poll on this in my Facebook group a while ago and I think most people said that coffee simply didn't work for them at all (a minority said it worked and another minority said it had adverse effects). My group tends to skew towards mild, mild/moderate though.
    Last edited: Jul 17, 2021
  10. Midnattsol

    Midnattsol Moderator Staff Member

    I'd love that, preferably with information on both normal days and PEM. The "gold standard" for collecting dietary information is a food diary for three to seven days, which is burdensome and especially in PEM I'm not sure how feasible it would be. I know there are online tools that can be ued, maybe someone has made an app to go along with any of them. Something to look into I guess.

    Protein intake did not reach the oh-so-important statistical significance, and thus not worthy of mention it seems.

    The mean amount of energy from carbs in the pwME group is ~34%, while it's ~44% in the Australian sample population. Both of those would be below most guidelines for how much energy to consume from carbs, and of course the small sample of pwME makes the numbers easily skewed by a few participants. Still, if the percentage of energy from each macronutrient had been calculated for each individual participant, it may not be so very different from the population data, there is no way of knowing if using the means is giving adequate information. Then again, it would be wrong to do so for the pwME and not the population sample, which may not include such detailed information (I don't think the corresponding Norwegian sample data provide individual data at least).

    The caffeine can be in any of the supplements, and they may not even be aware they are taking it (sadly, not reading the labels on supplements seem to be rather common). I wonder when we get the decodeME data if we will find that pwME have different caffeine metabolizing abilities.. in theory I should have a prolonged reaction to caffeine, but can't say I do. The times I feel my heart racing after ingesting something with a high coffeine content I believe it must be due to something else, as other times I can ingest the same amount and nothing happens.

    Interesting about the rye bread, the gluten in rye, barley and wheat is usually grouped together as they are so similar in strucutre celiacs react to all three. The gluten-like protein in oats (and rice) on the other hand are different.

    That supplements can change, and that we have different reasons for taking them, is a good point that can also be applied to the diet itself. I have a few supplements I take when I'm low on energy and not consuming enough of said nutrient to cover what my body needs. I find answering such questionnaired as real pain, as my diet can look drastically different based on my energy levels that week. Right now I have a pretty consistent intake of a few foods, as getting enough nutrients on the low amount of energy I need is difficult and by eating the same foods that are easy for me to buy and prep and provides me with what I need takes a lot of thought out of it.

    Mild/moderate here, caffeine does not consistently work for me. Neither does sugar, which it did for a while.
  11. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    There does seem to be a large variation between individuals as to what if any food intolerances they have and and also potentially variation with individuals.

    Also for me the symptoms of food intolerances are dose dependant, unlike the effect of allergies, introducing the idea of thresholds, perhaps making it harder to say that some one with a high threshold for their intolerance, actually has any intolerance or not.

    Some problems arise because, unlike allergies including celiac disease, we don’t have any good tests that can unambiguously list what an individual is or is not intolerant to. The only reliable evaluation is to eliminate the suspect food from your diet for a period of time then reintroduce it. To do this for a number of food stuffs can be time consuming, I spent the best part of a year on grains, and am still unclear as my reactions have changed over time, at one time only having problems with wheat and its near relatives such as spelt, but coping with rye, then after several years of no problems I respond negatively to rye in exactly the same as to other forms of gluten.

    Also it is possible that a negative response to food stuff is a result of a combination of more than one item. For example gluten for me (if after a period of being gluten free, then consuming a reasonable quantity) triggers migraine, nausea and general flue like symptoms some 24 hours after the gluten is consumed. One possible explanation for this time delay is that the gluten rather than being the primary trigger for the migraine causes a reaction in the gut lining altering its permeability to other chemicals, resulting in chemicals getting into the blood stream that normally would not be there, and it is these yet unidentified chemicals that might be triggering the conscious symptoms such the migraine.

    Then this is confused by the obvious fact that most foodstuffs are chemically complex. I have problems with even small amounts of alcohol, but it is is not consistent both in the symptoms triggered (eg red wine can sometimes trigger a rash, but wheat beer will trigger a migraine (is this gluten rather than alcohol?)), and other drinks will variably trigger other symptoms. So I have no idea if the alcohol itself is a problem or other ingredients of various drinks, though for me the easiest solution is to avoid all alcoholic drinks. Or alternatively I am just arbitrarily attributing random variation in my symptoms to coincidental alcohol consumption, which only occurs in social settings linked to increased exertion.

    It is very frustrating that the incidences of different food intolerances in ME have not been adequately evaluated. The best study I have seen unfortunately preselected people with already identified problems (‘The Role of Food Intolerance in Chronic Fatigue Syndrome’ Robert H. Loblay and Anne R. Swain, see https://www.slhd.nsw.gov.au/rpa/allergy/research/RoleOfFoodIntoleranceInCFS.pdf ), so we have no idea if it only effects a minority albeit it a sizeable minority of people with ME, or if like orthostatic intolerance it is present in some form a lot more than initially thought.

    Returning to the current study under discussion there is so much we don’t know, and so many studies that are not rigorous enough to give good answers.

    We have no idea if the diet choices made by people with ME, even if they were robust across a larger more reliably selected sample, are related to
    • rational food choices to help manage the ME (eg conscious such as deciding not to eat food they are intolerant to or unconscious such as for me rice now tastes much nicer than I recollect before I had gluten intolerance and this predated my knowledge of my gluten intolerance)
    • group beliefs on what the best diet for your condition might be or a collective idea about what I’ll people should eat
    • constraints on buying, affording or preparing different food stuffs imposed by an individuals limits on activity levels.
    However, certainly a lot of people with ME believe, or at least willing to consider the possibility, that diet and/or supplementation can help with their symptoms, so we need to know more about what people are regularly trying.

    Ideally on our current knowledge, everyone diagnosed with ME should be
    • assessed for any deficiencies and if appropriate given supplementation
    • provided information on potential intolerances, supported in identifying any and given dietary advice if eliminating certain foods is appropriate
    • supported if appropriate to access a balanced healthy diet
    Then Surveys such as this could perhaps identify if there is any consensus within the patient community if any specific diets or supplements are helpful for people with ME, enabling targeting more objective evaluation of the identified approaches.
    Last edited: Jul 17, 2021
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  12. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

    This seems to be reported quite consistently in the ME/CFS community.

    I wonder if patients with other chronic, fatiguing illnesses also consume less alcohol and say they don't tolerate it any longer. Would be interesting to do a study on this.
  13. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    You see this in various acquired neurological conditions, such as stroke, in a general response to alcohol. But also specific symptoms such as spoken language in aphasia or movement control in people with hemiplegia are impacted by relatively small amounts of alcohol.
  14. Mithriel

    Mithriel Senior Member (Voting Rights)

    I could not answer questions about my diet as it varies too much.

    For much of my illness I have had hypoglycaemia (confirmed by blood test) if I had any exertion close to meal times. These come on suddenly and by the time I realise what is happening I can barely open a tin of coke or cram a bar of chocolate in my mouth. I never have soft drinks at any other time and rarely eat chocolate or sweet things.

    I would feel better after eating some crisps which I know now is due to the salt helping with POTS. Again something I rarely have any other time.

    It has never been possible for me to keep to a special diet or even a food plan; the ME is just too variable. The choice is often unhealthy or nothing or what someone can make for me.

    When I feel well enough I make healthy nutritious meals, large salads, vegetable stews, grilled chicken but preparing vegetables is not easy compared with opening a packet of biscuits or shoving something in the microwave.

    I have bought potatoes for the last 5 weeks but they have all had to be thrown out as I've not been well enough to cook them. I dream of boiled potatoes and boiled carrots.:)
  15. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    @Michiel Tack

    Yes, it would be interesting to do a study on this.

    Alcohol intolerance has been noted by ME expert, Dr. Anne Mildon, Toronto, on page 18 in a Health and Welfare Canada, Laboratory Centre for Disease Control, publication, 1991. The publication title is: Proceedings of a workshop, chronic fatigue syndrome. Toronto, Ontario, 28-29 September 1989. Editor, Kenneth R. Rozee.

    This publication is in the series: Canada diseases weekly report. Supplement; v. 17S1E.

    Frustrating, as I have tried to locate the link to this, I know it's there somewhere, but here is what Dr. Mildon said on page 18:

    " Exclusion Criteria
    1. We exclude all patients who overuse alcohol - by which we mean 3 oz. of liquor per week or 3 wine or 3 beers per week. This is because alcohol intolerance is one of the hallmarks of the disease among almost all patients. Consequently, any patient who can tolerate a great deal of alcohol in the course of normal living is unlikely to have CFS and immune dysfunction. Sometimes these factors can be excluded but it is very unlikely." (my bolding)

    I understand by the time of this 1989 workshop, Dr. Mildon had seen about 700 pwME/CFS.

    I'll keep looking for the publication.
  16. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)


    There's also this study by Wessely and colleagues which reports "Our data supports the anecdotal belief that chronic fatigue syndrome patients reduce or cease alcohol intake." https://pubmed.ncbi.nlm.nih.gov/15016579/
  17. rvallee

    rvallee Senior Member (Voting Rights)

    In case anyone wonders whether this also applies to long haulers: yes, it absolutely does, to many anyway. Could not keep track of the number of reports I have seen of relapses after a single drink. For some it's fine, or at least does not cause crashes or relapses, but there is a group in this population with clear alcohol intolerance, whatever that means physiologically.

    Odd that I haven't seen the possibility that this is because alcohol is a vasodilator. Would make sense if one component of dysautonomia impairs the vascular system. I have no memory of cases of drinking too much, since at higher concentration it apparently becomes vasoconstrictive (if I read it right). Usually it's a single drink or at most a couple.
  18. Barry

    Barry Senior Member (Voting Rights)

    Significantly worse than useless in a way, because they give the illusion of well informed science to those not in a position to know any different.

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