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.
Discuss the article on the Forums.

Professor Ron Davis's response to Naviaux study, including Q and A with Dr Naviaux

Discussion in 'Latest ME/CFS Research' started by Ben H, Aug 30, 2016.

  1. Molly98

    Molly98 Senior Member

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    I have also had a distinct change from picking up every illness and Infection going round since first having ME to over the past few years bizarrely not seeming to get anything. I find it very odd as for most of my life I have seemed far more susceptible than most to illness and Infection than most and this has certainly as been the case since having ME after bad case of EPV age 20 (almost 25 years ago) This change has coincided with other aspects of ME becoming worse, OI, sensitivities , eye pain , neurological symptoms, that I am largely house bound and now use wheelchair. But no Infections. I do find it very weird because I am so used to bracing myself every time husband or daughter get cold, virus, or sickness bug, because I would always be guaranteed to get it and it always effects me badly. I used to get a lot of sore throat, swollen glands with ME flare ups but don't really suffer from these now, some times swollen lymph nodes if bad flare up but still different from how it used to be.
     
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  2. soofke

    soofke

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    Dutchy
    here also hardly any flu since, in my opinion, the king of flu's; m.e.
    but for a fair comparison we should ride as many trains and buses and hang around offices, like/as the healthy folks

    no metabolic issues allover btw here, just in brain & throat, few other tiny spots
     
    Last edited: Oct 15, 2016
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  3. Barry53

    Barry53 Senior Member

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    That really does sum up what good science is about, doesn't it?
     
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  4. hixxy

    hixxy Senior Member

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  5. Anne

    Anne Senior Member

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    I find this - the fact that people change from one group to the other - very interesting, @hixxy @Sidereal

    But I would say that this only increases the importance of stratifying these subsets in all studies! It's quite possible that the immune signals will look very different before and after the shift (just like they are likely different between "always double sick" and "sick but never sick" groups). If the groups are put into one bag in a study that could muddle the results, right?

    I sent an e-mail about my suggestion to stratify these groups to Linda T at OMF and received a very nice response - she will be forwarding the question to Ron Davis and Bob Naviaux.
     
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  6. Sidereal

    Sidereal Senior Member

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    Btw Anne, in a strange coincidence, I've been dealing with the first cold this week for the first time in many years. Seems like the pendulum is finally swinging back in the other direction thanks to the interventions I've been doing this year but boy, do I feel absolutely awful right now. (Though I should add that when the infection started 10 days ago or so my energy levels, muscle power, orthostatic intolerance and mood improved enormously, then a mild fever hit, and after that it's been downhill into ME/Dauer hell once again.)
     
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  7. Michael_venice

    Michael_venice

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    I just saw all of this. It's strange, how long and deep I dive into things and then run into more when I was sure I'd exhausted the search.

    I had some kind of seizure activity for years of this illness. I didn't know what it was, but when explained to a few neurologists and another doc—they all said 'seizure'. Not thrashing around kind, and at moment a bit too fried to double check b/c clonic, myclonic, and the spectrum are confused in my head right now. But seizures of some kind, and even not grand mal, terrifying and there is a serious zap-feeling brain-neuro hangover that's a lot too. It's so rare that I take supplements or many treatments and feel any sort of certainty that it's actually doing something—if our baselines are terrible, it's hard to get a fix. But I am absolutely certain that the seizures decreased hugely after I started taking sunflower lecithin. I didn't register that it had acetylcholine in it, I was trying it for something completely unrelated to larger CFS (I was trying it for gut issues).

    Some of the theories get a little above my pay grade, but that apparently taking in acetylcholine and years of seizures nearly stopped (as well as some other really awful neuro symptoms) was really a big thing for me. I'm still really sick, but at least I have less of THOSE things.
     
  8. boohealth

    boohealth Senior Member

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    It might also be the phosphatidyl choline itself. That's the major fatty acid composing the cell membrane.

    might
     
  9. Nickster

    Nickster Senior Member

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    Hi Ben,

    I was just checking to see if there have been any new updates on the ongoing research. I am trying to give some type of encouragement to my 25 year old son with severe cfs/me.
    Thank you for all of your communications!
     
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  10. AndyPR

    AndyPR Senior Member

    Just tagging @Ben Howell to help him see it, though I'm sure he said that we're not anticipating any official update until the IiME conference, which is end of May/beginning of June.
     
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  11. Nickster

    Nickster Senior Member

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    I am new to this site and a bit tech challenged. Thank you!
     
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  12. Jesse2233

    Jesse2233 Senior Member

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    You can share with him that Dr John Chia recently told me a potent new antiviral for CFS/ME is being developed in Belgium
     
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  13. Ben H

    Ben H OMF Correspondent

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    Hey @Nickster

    Im so sorry to hear your son is going through this .

    There should be some updates soon, and with the London conference coming up some updates and maybe a video with that. I'll tag @Janet Dafoe (Rose49) as she will know more!

    I can tell you the team are making amazing progress however, and we are in such good hands.


    B
     
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  14. Nickster

    Nickster Senior Member

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    Thank you for the update. I know you struggle with this disease as well and are thankful for your all of your communications. I hope we have a cure soon and we can all be telling stories of recoveries and enjoying life!
     
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  15. Alvin2

    Alvin2 If humans were rational...

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    I like hearing that :)
     
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  16. Nielk

    Nielk

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    Thanks for this info. Do you know who is working on this?
     
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  17. MEMum

    MEMum Senior Member

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    Hi, research conference is Fri 2 June. Several from PR are going. Hoping to provide some info from at least 2 of us. Prob just highlights over the foll w/e, then more detail as and when time and energy allow.
    It is such a great day, I wish you could all be there. Hearing top researchers illuminating how many biomedical abnormalities there are, ie it is a real organic disease. Plus the enthusiasm and hope for understanding and a cure is almost tangible.
    Exhausting but amazing.
    PR are still looking for someone with the brain and dexterity to tweet. Any offers? @Keith Geraghty or anyone else?
    I am able to help with train fare/conference cost if that is a problem. PM me
     
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