The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Has there been any research into gradual onset progressive ME? Theories how to slow/stop/reverse it?

Discussion in 'General ME/CFS Discussion' started by veganmua, Aug 18, 2017.

  1. veganmua

    veganmua Senior Member

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    I'm getting so much worse. Looking for anything I can do to improve the situation
     
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  2. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    That's the question isn't it. Are you familiar with Multiple Chemical Sensitivity?

    As a Make Up Artist you may be unintentionally worsening your condition. Many have been able to lessen the severity of this illness by avoiding petrochemical, mold, and allergen exposures.

    That's just a start though, there are no easy answers.
     
  3. Learner1

    Learner1 Professional Patient

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    The recent research has shown CFS patients to be short of amino acids and B12, which are in short supply on vegan diets, unless one is supplementing in robust amounts.

    Many doctors are recommending ketogenic (low carb) diets and some patients are experiencing improved symptoms. I knew a glioblastoma patient who was on a vegan ketogenic diet, but it was extremely difficult to do. By and large, vegan diets are very high in carbs and lacking in protein and saturated fats (which the body needs, contrary to low fat dogma).

    I won't say diet is going to completely cure us, but having a foundation of high quality nutrition is essential. Its worth a try...
     
  4. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    ME has to be progressive in some cases, it's certainly my case... I'be getting slowly worse over the course of the last 20 years. However, I think overexcerting can accelerate the process, which is my case. Originally, I still was able to ride a bike for relatively long distances witouth PEM, today that's impossible. I'm sure that if I had abandoned the bike forever 20 years ago, started to extrictly avoid running for any length, learn to do every activity slower, my disease wouldn't have worsened nearly at all! That's why it is important to have a correct diagnosis as soon as posible, in order to stop going one's phisical limits and worsening the disease permanently
     
  5. veganmua

    veganmua Senior Member

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    I haven't been able to work as a makeup artist since 2015, and I would say I wear makeup once to twice a month now. The thing is, I've tried a lot of supplements in my quest for wellness, and I've never had a bad reaction. Usually there's no difference or improvement. Medications tend to have slightly more of an effect on me, but absolutely nothing severe or outside the commonly reported side effects.
    The only things I've ever been a bit sensitive to are dust and mould, which make me itch and sneeze. I (or rather my family) keep those to a minimum at home.
     
  6. veganmua

    veganmua Senior Member

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    I do drink protein shakes and eat coconut oil for saturated fat. I also put liquid aminos (a condiment) on my food. I supplement methylcobalamin and hydroxycobalamin.
    I'm already on a low FODMAP diet for my IBS, not sure how feasible adding keto to the mix would be.
    Do you have any links to research on ketogenic diet in ME/CFS? I'm sure I read somewhere that ketosis is not a state you should be in permanently. Thanks.
     
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  7. veganmua

    veganmua Senior Member

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    Hindsight is 2020 isn't it?
     
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  8. Learner1

    Learner1 Professional Patient

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    There's been a lot of positive dialog about it on this site, and it was mentioned as helpful at the OMF Symposium last weekend.

    Alessandro Ferretti gave an excellent presentation to the doctors at the SHEI Conference. It's not for pregnant women, but should be ok for the likes of us.

    Both of my CFS doctors (in different states) want me on it... I had first learned about it as a cancer-fighting diet during my cancer treatment. Dominic D'Agostino and Thomas Seyfried have good things to say about it.

    Worth a try... I find I need 95g of protein a day, based on my labs, impossible to get on a vegan diet without too many carbs...
     
    Last edited: Aug 18, 2017
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  9. Learner1

    Learner1 Professional Patient

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  10. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    No one knows.. A lot of the very severe cases had been pacing prior to getting totally bedbound, so progression is not always related to exertion.
    I think immunomodulators are all we got at the moment, with uncertain response rate.
     
  11. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    @veganmua I'm really sorry to hear that you haven't been able to find anything to help you lessen the severity of this illness. I understand how intolerable it can be.

    Sativex is available for you, and would help with improving sleep, reducing IBS symptoms, and fibromyalgia. :thumbsup:
     
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  12. bspg

    bspg Plant Queen

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    I have a progressive form as well and often wonder if there anything I can do. So far I haven't found anything :( My new CFS doc suspects that my body may be shifting towards more autoimmunity (I already have hashi's) and I am getting worse and feel so helpless to stop it. :(

    @veganmua if you find anything, please share.
     
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  13. veganmua

    veganmua Senior Member

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    A vegan keto diet is certainly possible, but adding low FODMAP into the mix will be tricky. I guess I could see if a dietitian would be willing to draft me a meal plan?

    I've been thinking of trying CBD oil, but I wouldn't want to try anything containing THC. I'm 'straightedge', don't even drink, and the idea of feeling intoxicated in any way scares me, to be honest!
     
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  14. Learner1

    Learner1 Professional Patient

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    My CFS doctor said that already having autoimmune disease (Hashimotos and celiac) made me more prone to developing more autoimmunity. He considered both the Mayo clinic panel and CellTrend and we went with CellTrend as it was half the price and found adrenergic and muscarinic antibodies which explain some of my symptoms.

    Then, he found a hidden case of EBV that my immune system wasn't reacting properly to (didn't show yup on the common tests, but did on others) which he thinks is causing them, along with other infections.

    We're hoping that IVIG and attacking the infections may reverse the antibodies...

    Maybe your doctor hasn't found the whole picture?
     
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  15. Learner1

    Learner1 Professional Patient

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    You could. Or perhaps you could try eating meat/fish/eggs which have important nutrients your body needs. You might try with some digestive enzymes and probiotics if you haven't eaten it them in awhile as your microbiome may need time to adjust.

    Diet can be a big factor in illness. If you're not getting better, its one factor you can experiment to see if it helps.

    The current research seems to indicate that most of us have issues with pyruvate dehydrogenase, needed in converting carbohydrates to energy via the Krebs cycle.

    It also indicates ME/CFS patients are prone to having low amino acids, low B12 and other nutrients, and SIBO, which is driven by a carb heavy diet.

    All of these suggest that a heavy carb, vegan diet might not be in your best interests and that a ketogenic diet with animal protein and low carb, non starchy vegetables might be worth a try.

    Probably not what you want to hear, but if what you're doing isn't working, and maybe making you sicker, it might be worth trying something new.
     
  16. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    Cannabidiol (CBD), will not intoxicate you and will give you many of the benefits of proper cannabis.

    In London, I bet you couldn't travel 1km without finding a shop currently stocking a bottle. ;)
     
  17. bspg

    bspg Plant Queen

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    @Learner1 I think we're seeing the same doctor, but I've only just started seeing him so there's still much to be investigated. Like you, I also have weird stuff going on related to EBV, but not exactly sure what. EBV PCR always comes back negative but all my antibodies (including IgM) remain persistently elevated (for over 2 years). Lymphocyte subset panel shows nothing abnormal. My CRP also went from 0.9 to 6.2 between 2015 and 2017 so that's another reason he's concerned about autoimmunity.

    Unfortunately Medicaid is my only health insurance and I'm too ill to work so I can't afford the Cell Trend test. I'd like to get the Mayo autoimmune dysautonomia panel but will have to see if Medicaid would pay for it.
     
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  18. veganmua

    veganmua Senior Member

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    I've been looking into it and it seems CBD is metabolised by the same liver pathway as my antidepressants, so taking them together could cause toxicity. I'm already on a very high dose, so I doubt it'd be safe! Annoying because I was hoping it could treat my RLS and periodic limb movement disorder.
     
  19. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    Good call. :thumbsup:

    There might be an option to reduce your antidepressant dose, as CBD has antidepressant properties itself.

    It's times like this that a knowledgeable Physician can be so helpful.
     

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