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Marathon runner forced to quit work after developing ME claims diet change gave him his life back

Discussion in 'General ME/CFS News' started by John Mac, Jul 13, 2018.

  1. John Mac

    John Mac Established Member (Voting Rights)

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    Interesting article on iNews website.
    Looks like he tried a variety of things so I'm not sure any one thing can be given credit, he may have just improved over time anyway.

    https://inews.co.uk/news/health/marathon-runner-quit-work-me-cfs-diet-change/
     
  2. Melanie

    Melanie Senior Member (Voting Rights)

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    Sounds like dairy and gluten allergies and a misdiangosis of ME.
     
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  3. Diluted-biscuit

    Diluted-biscuit Senior Member (Voting Rights)

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    I agree with Melanie. I’ve tried all those diets and more with no benefits.

    What do people think of the Yorktest company tests? The intolerance tests I’ve seen before have been complete nonsense.
     
  4. Kafka

    Kafka Established Member

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    I agree, It does sound like food allergies.

    However I manage my ME with a very low carb and an elimination diet - and have found that the resulting decreased inflammation, keto diet and specific probiotics (MAF) have eliminated all symptoms. I was diagnosed by two NY ME specialists, and have 2 family members also diagnosed and being treated by specialists.

    There seems to be a connection between between ME, diet and inflammation (and for me getting energy through ketosis).

    My energy fails when I come out of ketosis, or have increased inflammation (surgery) or are taking antibiotics (for SIBO), or stop the probiotic MAF -but my symptoms are still much reduced even in this state.
     
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  5. melihtas

    melihtas New Member

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    I did have Yorktest about 8 years ago. Their dietitian told me that she had never seen a single person had an intolerance to so many different foods before.

    I tried the diet they gave me very strictly for 6 months. My IBS diarrhoea got a little bit better. Other than that, none of my ME symptoms improved.

    I think food intolerance is the result of ME, not the cause.
     
  6. Sarah

    Sarah Senior Member (Voting Rights)

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    I think Yorktest is or at least used to be an IgG test with superficial veneer of plausibility from allusion to IgE mediated allergy, but no real research basis. I'm not entirely sure how they go about testing (as it were) such a broad raft of foodstuffs.
     
  7. Alvin

    Alvin Senior Member (Voting Rights)

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    People who are misdiagnosed are going to find improvements from different things because they don't actually have ME
     
  8. erin

    erin Senior Member (Voting Rights)

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    I've been both gluten and dairy free since 18 moths. I feel definitely better past 5-6 months. But no way I could go back to my old life with full time job and all the partying and part time dancing hobby. No way...

    Right diet changes helped me, it took me 13 years to figure out which diet and supplements are useful. No help from conventional medicine, I had to find and try it all by myself. And these changes on their own is not enough to beat this illness. It only helps to maintain slightly better life standard at the moment. This does not mean I didn't have major downs while I'm gluten and dairy free.

    This is a lonely place. Conventional medicine and the media against you. Most of the family and friends are not with you. Alternative medicine is very large and difficult to sift through. It's hard and one is already drained so much. Especially when you hear news like this feels lonelier and harder.
     
  9. Melanie

    Melanie Senior Member (Voting Rights)

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    I went Gluten, dairy, caffeine, and wheat free for over a year to no avail. I did have a Celiac disease test and it was negative. If one feels better or less bloated, that's great but unfortunately for me, nothing ever worked. I juiced too. ugh
     
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  10. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Over twenty years ago I went into complete remission following a period of a raw food, organic vegan diet, with lots and lots of supplements under a nutritionalist. However it is impossible to say whether this was a causal factor or coincidental to a spontaneous remission. Also I was trying lots of other things at the same time, including going half time at work. In retrospect I suspect the diet helped ease the symptoms and that my remission was spontaneous perhaps helped by dramatically reducing what I was trying to do, however I could quite easily have taken on board my nutritionalist's evangelical beliefs that diet is the answer to everything.

    After a couple of years I had a major relapse linked with a bad dose of flue. Subsequently I have had repeated relapses and remissions, with each relapse worse than the previous and each remission not achieving as much recovery. Also I have since discovered a gluten intolerance whilst trying an exclusion diet, and have subsequently developed intolerances to caffein and alcohol.

    Diet now helps my moderate symptoms, but does not seem to reverse the underlying course of the condition.

    Relying on a one off personal experience is always open to misinterpretation, especially as spontaneous remission can not be ruled out, and as others say misdiagnosis and the issue of food intolerances and allergies can not be excluded, and also we do not understand how the food intolerances commonly associated with ME actually relate to the ME. For example I now have no objective way of establishing if my gluten intolerance predates my ME or is a consequence/symptom of the ME.

    (Sorry this is a bit rambling, have done too much the last few days and not organising my thoughts well.)
     
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  11. TiredSam

    TiredSam Moderator Staff Member

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    Call me a cynic but the first thing I look for now in articles like this is "what are they selling?" Nice publicity for Yorktest this time. Apart from that another n=1 story, all kinds of stuff thrown together (rather than decently researched) by the journalist, including this:

    Fills column inches I suppose.
     
  12. Melanie

    Melanie Senior Member (Voting Rights)

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    Also, athletes get "overtraining syndrome".

    The Tired Athlete: Understanding Fatigue and Recovery

    "After 2 to 4 weeks of increasing your CTL by such excessive amounts you are likely to be toast. You’ll be in the early stages of the overtraining syndrome. That will be marked by symptoms like:

    • relentless fatigue
    • poor training performance
    • lethargy
    • low motivation
    • bad attitude about life in general
    If you keep pushing it beyond this fatigue you’re likely to experience full-blown overtraining which is similar to having a disease such as mononucleosis, chronic fatigue syndrome, or Lyme disease. It isn’t pretty. And it may take you weeks if not months to shed the overtraining symptoms."
     
  13. Pechius

    Pechius Senior Member (Voting Rights)

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    Many people find something that helps them improve and to say that it is because they don't have ME? I think that's a bit too far.
    E.g.:
    Probably the most common thing I see people reporting again and again that has helped is diet. I would never say that it is a cure or that diet was a 'cause'. That is nonsense. But to suggest that if someone finds it helpful they don't have ME? At this point in time, when we don't even know what it actually is?
     
  14. Alvin

    Alvin Senior Member (Voting Rights)

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    You realize the internet is crawling with people who have magical cures they say helped them and far beyond ME. Then there are people who would have recovered anyways or had something else but happened to use something coincidentally at the time. Finally they may have been self diagnosed or diagnosed with older not as good ME/CFS criteria or by a physician who made mistakes or believes its psychosomatic so lumps many things into ME
    Anecdotal evidence is worth what you pay for it.
     
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  15. Pechius

    Pechius Senior Member (Voting Rights)

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    Yes, I do realize it very well, but it doesn't lead to this conclusion: "People who are misdiagnosed are going to find improvements from different things because they don't actually have ME".
    You're basically insulting all patients who find something helpful. I think that's very unfair.

    Where do you think the science starts? From anecdotal evidence. It's up to scientists to judge whether those anecdotes have any merit. I think it's very unlikely that GI tract is not involved in ME, so I'm not gonna dismiss the idea that diet may give some benefit for some patients just because it's anecdotal, let alone say that the person doesn't have ME in the first place..

    I hate these uncritically written articles just as much as you do, believe me. It's just that I think the whole 'if you recovered or got better then you didn't have ME' mantra is going a bit too far sometimes.
     
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  16. Alvin

    Alvin Senior Member (Voting Rights)

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    I am not insulting all patients, i am saying that none of these things are proven cures or radical treatments and if they were miraculous treatments we would all use them and be doing great
    Notice how i said "who are misdiagnosed", not "must be misdiagnosed".

    Science starts by developing a theory and testing it. Theories can come from anecdotal evidence but are not proven till properly tested. If detoxes, diets, vitamins, stem cells, LP or denial were excellent treatments then they would easily prove themselves in a non doctored trial.

    Perhaps, but if people believe tripe then there is an unlimited supply. We know nothing about what symptoms these anecdotal people had, we don't know that they even have ME except their claim
     
    Last edited: Jul 14, 2018
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  17. Pechius

    Pechius Senior Member (Voting Rights)

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    Ok, fair point, but you are still making that point in relation to the person in the article and we don't know if he's misdiagnosed. Maybe he is.
     
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  18. Alvin

    Alvin Senior Member (Voting Rights)

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    I just said if he is misdiagnosed then a treatment that works for his misdiagnosis would work for him
    If he has a food allergy for example then eliminating that food will help
     
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  19. Webdog

    Webdog Senior Member (Voting Rights)

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  20. erin

    erin Senior Member (Voting Rights)

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    I don't have Celiac disease either @Melanie. I resisted gluten free diet many years. I tried and could not keep going. Then I got sicker and sicker I had no choice. All that time I was not given Celiac test and no medics suspected of it. I researched my self and tried to eat gluten free. In the end, I successfuly continued and payed attention to cross contamination too for a year and a half. Now, I see a change in my energy level as well as bloatedness and nausea. Also joint pain is lessened.

    A year into my gluten free diet, a gastro specialist gave me an endoscopy and the result was negative. Then he told me that I should eat gluten for 3 months and repeat the test. I didn't do that. Because I tried gluten every now and then in the past and each time I felt so sick. It's not worth it.

    I became very sick last year, round about this time. I loved kefir and drank it almost every day. First, I thought it was kefir to blame. Then I realized it was all dairy, everything with dairy -not only lactose. I can not tolerate dairy protein somehow. This started very suddenly. I can't understand this. I still try a little every now and then, I can eat tiny amount of goats cheese, I mean really tiny every now and then. Last week I had a scoop of ice cream and I was sick for days, not worth it!

    And I don't take a lot of caffein anyway. I dislike coffee, makes me very nauseous and get palpitations instantly. Not keen on decaff. I drink 2 cups of tea most days.

    I've never juiced. I don't know much about it.

    After going gluten and dairy free my regular blood tests are improved (I have Hashimoto's and supplement with euthyrox), my thyroid anti bodies were crazy; at almost 1700 and B12 was always low on 110's now they are both normal. I don't have B12 injections anymore.

    I feel gluten issue is a complex and not totally understood. It feels like it is much more than an allergic reaction.

    This diet change more than helped me, though it absolutely did not cured my ME. I am still unable to live like a normal healthy person. I sleep 11 hours every night and woke up feeling only slept 4 hours. I still get tired quickly, I have blurry vision, my limbs are numb frequently, I have persistent skin conditions and a cough does not go away.

    PS. @Pechius , I was diagnosed with ME in 2008 and I'm pretty sure that @Alvin knows that I have ME.
     
    Last edited: Jul 15, 2018
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