Our Newly Ill Face Their First Holiday Season with ME/CFS
Don't look now! The holiday season is on its way. I've lived through decades of them with ME/CFS. So have many of you in our chronically ill community. That's beyond sad for all of us. But at least we have some idea what we're contending with, and have learned our ways of handling...
Discuss the article on the Forums.

Special Message for you from Ron Davis (video)

Discussion in 'General ME/CFS News' started by Ben H, Dec 17, 2018.

  1. Ben H

    Ben H OMF Correspondent

    Messages:
    966
    Likes:
    10,745
    U.K.
    [​IMG]
    Special Message from Ron Davis

    Dear friends,

    As this year comes to an end, I would like to take a moment to express my gratitude to those who have helped us to advance research to end ME/CFS. With your support, we are making important strides towards understanding ME/CFS.

    This year we have made positive progress and we won't stop until a cure is found!




    We're closer than ever to a cure for ME/CFS, but we could make progress so much faster with even more funding. Your donation to OMF before the end of the year can ensure that this promising research continues to move forward in 2019

    Make your donation TODAY.

    Thank you for joining us to end ME/CFS.

    Wishing you and your family many moments of love and peace during the holidays,
    [​IMG]
    Ronald W. Davis, PhD
    Director, Stanford Genome Technology Center
    Director, OMF Scientific Advisory Board

    [​IMG]


    www.omf.ngo



    @Janet Dafoe (Rose49) @AshleyHalcyoneH @marilynbsg
     
  2. Belbyr

    Belbyr Senior Member

    Messages:
    222
    Likes:
    442
    I hope this doesn't throw a wrench into the metabolic trap theory with what sounds like some testing issues he mentioned.
     
    mattie, taniaaust1, sb4 and 3 others like this.
  3. Hopeful1976

    Hopeful1976 Senior Member

    Messages:
    145
    Likes:
    317
    Don't know about others but I feel really saddened and flattened by Ron and his words here. He is an absolutely amazing man and I am so grateful to him for his efforts, but the vagueness and not knowing what is going on, with the metabolic trap and others, is killing me! I would rather know everything, good or bad, than wait for months on end with vague comments now and again and yearly talks that offer so much promise but which never come to any further discussion... I feel so sad; so hopeless. What is actually going on? I mean actually - not vague snippets...
     
    gbells, Kenshin, MonkeyMan and 4 others like this.
  4. Ben H

    Ben H OMF Correspondent

    Messages:
    966
    Likes:
    10,745
    U.K.
    Hi @Hopeful1976

    To me, as a patient, the video is extremely clear and not vague in the slightest.

    Ron has mentioned the issues with the metabolic trap testing, and needing to make sure the results are correct because of the mass spectrometer. That's being absolutely honest even if it's not perfect news and a set back. Ron is telling you the good and bad.

    They are planning to put in new grants in February, have a new writer helping write those grants.

    I'm not sure what you are expecting, especially with the 2nd Symposium having happened in August and the information from there.


    B
     
    Last edited: Dec 17, 2018
  5. Ben H

    Ben H OMF Correspondent

    Messages:
    966
    Likes:
    10,745
    U.K.
    Hi @Belbyr

    I think it has a little, not that the theory in question is now invalid, but they actually need greater accuracy to see if the theory is valid.

    If that makes sense. Sorry, cognition.

    There is not enough funding, and especially lack of NIH funded grants (and their review process). It's because of your amazing generosity that we have been able to get this far.


    B
     
    Last edited: Dec 17, 2018
    Webdog, Joh, Mel9 and 4 others like this.
  6. Hopeful1976

    Hopeful1976 Senior Member

    Messages:
    145
    Likes:
    317
    Hope followed by nothing. Followed by no news, followed by snippets,followed by nothing then false hopes.
    Yes the symposium was amazing - so much hope from Davis and Phair - then ' there are problems with the testing', so more months/years of waiting for better testing. I hate it all. I hate this world of m.e. I hate the lifting of hopes to the knocking them down. In think I'm better off not looking for cures/ treatments anymore. It gets me down.
     
    maybe some day and perrier like this.
  7. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

    Messages:
    724
    Likes:
    13,367
    I will get Ron to clarify as soon as he gets home. He believes Patients deserve updates and to be kept in the loop. All research has glitches that need to be worked out. It's normal. And frustrating. But they keep going and work them out and make progress. This is a hard problem. It's unlikely to be solved with existing methods and means. We've got a team here who are developing technologies and means that are totally new. They have made lots of progress and have learned a lot. They are proceeding on many fronts. We remain full of hope. It just takes more time than we'd like. Believe me - I really want this to get solved! And I'm hopeful!
     
  8. jesse's mom

    jesse's mom Moderator

    Messages:
    2,869
    Likes:
    7,189
    Alabama USA
    I am glad for the update! Research is slow if it is to be accurate! Ron looks tired bless your family @Janet Dafoe (Rose49) ! I know Ron wants a cure as much as anyone on the planet! Thank him for keeping us posted and taking the time to send us an update, however tiring and messy this job is!
     
    bertiedog, merylg, Kenshin and 16 others like this.
  9. Neunistiva

    Neunistiva Senior Member

    Messages:
    381
    Likes:
    1,930
    Dr. Davis and the Team are walking the unexplored paths in medicine (unfortunately for all of us) and it is understandable that things are not going as fast as we and Dr. Davis hope.

    I always dream Dr. Davis is going to say "We solved it!" but that's not realistic. Since there's no magic wand to take our suffering away all we have left is science, and that's a slow progress.

    I for one am very satisfied Dr. Davis is insisting on accuracy. Last thing we need are results that are misleading. We had enough of those.

    I think it's impressive that Dr. Davis is able to keep a cool head despite so much being on the line, and keeps on doing good science, and spreading his scientific "tentacles" to other institutions and scientists :)

    I made a donation right away and will be asking my family and friends to do so too. That's the only way to speed up the research.
     
    bertiedog, Kenshin, Diwi9 and 11 others like this.
  10. Belbyr

    Belbyr Senior Member

    Messages:
    222
    Likes:
    442
    I don't have doubts about the trap. I just was hoping he would beat everyone else to it. Nancy Klimas group (and Cortene) also believe the trap and I know some of them have been pursuing this theory before Ron Davis's group came on the scene. There was even an article that came out today stating CFS patients are in a chronic immune overdrive that goes undetected. Same issue, it's the funding that's a problem for everyone.

    I guess my only small gripe is trying to find who best deserves my saved $ for research at the end of the year. It's a good gripe to have because at least there are multiple players in this game now. 3 - 5 years ago... Not much. :(
     
    bertiedog and FMMM1 like this.
  11. taniaaust1

    taniaaust1 Senior Member

    Messages:
    12,569
    Likes:
    14,297
    Sth Australia
    it is sad. it saddens me too but on the other hand I'm so happy that they are really trying, that people, good people are really trying to solve this. ONE DAY (who knows when) it will be solved. It's excellent that they are being so careful that their findings are correct.

    As a patient I'm much happier about being kept in the loop of what is happening rather than being left out of it so to not know that anything is really going on. Would you rather not hear a thing and hence not be left with any hope and encouragement? Even with failures, it teaches them a little more as they try to hone things in. As long as we are getting good reseach into areas which could pan out, it's progression. There is no overnight fix with this even if we wish there was.

    Thank you Ron and thanks to the other good researchers too. You are doing a great job there even if things are slow.
     
    Last edited: Dec 17, 2018
    bertiedog, Ben H, Mel9 and 5 others like this.
  12. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

    Messages:
    724
    Likes:
    13,367
    Ron worked late and then we had to get another blood sample from Whitney for the research and he took it to the genome center. Didn't eat till 9:00. Too tired to think. Will have to respond when he can. Just know that the research is going full steam. It's never as fast as we would like. But it's happening and it's good.
     
    bertiedog, merylg, Judee and 11 others like this.
  13. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

    Messages:
    724
    Likes:
    13,367
    Sorry, but no, no one worked on this metabolic trap hypothesis before Ron. It was discovered by Rob Phair working with Ron at the Stanford Genome Center. It's very specific. Watch Rob Phair's talk at the Stanford Community Symposium in August.
     
    bertiedog, merylg, Kenshin and 11 others like this.
  14. mattie

    mattie Senior Member

    Messages:
    161
    Likes:
    552
    Wishing Ron Davis & Family a blessed Christmas with hopefully some well deserved Rest and Relaxation for Dr. Davis.
    Thank you for all your hard work. Thank you for not giving up.

    Help Dr. Davis & his team forward and keep those donations coming!

    Donate now and help speed things up as much as possible.
     
    Judee, luludji, ScottTriGuy and 4 others like this.
  15. taniaaust1

    taniaaust1 Senior Member

    Messages:
    12,569
    Likes:
    14,297
    Sth Australia
    I hope he (Dr Davis) gets some good rest over Christmas.
     
    Judee, nandixon, FMMM1 and 4 others like this.
  16. neweimear

    neweimear Senior Member

    Messages:
    215
    Likes:
    614
    I'm being honest and hugely disappointed. The highlight and big star of the Symposium was the trap and now we are told it's unreliable. I'm not blaming the Researchers, I know they are trying but I myself feel like stopping following the whole thing. @Ben H you forever put a shine on things when some of us are hanging on by a thread. Donating, donating endlessly. Nancy Klimas said in a recent video she was closer than anyone to solving this, I've asked a number of times why OMF don't work with her and help her get trials off the ground. She is ready for clinical trial so why not work with her? Ready for trial @Janet Dafoe (Rose49) . I can't understand why there is no link up.
     
    Hopeful1976 and perrier like this.
  17. Neunistiva

    Neunistiva Senior Member

    Messages:
    381
    Likes:
    1,930
    No one said metabolic trap is unreliable. Dr. Davis said that mass spectometer is not accurate enough for their taste and they have to develop a new way to do it where precision will be satisfactory to them.

    Also, please remember that both Dr. Davis and Dr. Phair made it very clear during the Symposium that metabolic trap is an unproven hypothesis and could be wrong, as promising as it is.

    Don't put all your hopes in it, rather put the hope in the rising number of researchers joining our fight and the hard work everyone is putting in it.

    This is a difficult time for all of us and it's alright to take a break.

    However, everyone who is frustrated with slow research should put more pressure on NIH director, not take it out on researchers who are actually the only ones giving us real tangible hope right now.

    Your anger and disappointment is justified, but you're taking it out on the wrong people.
     
    bertiedog, lafarfelue, Diwi9 and 9 others like this.
  18. neweimear

    neweimear Senior Member

    Messages:
    215
    Likes:
    614
    Don't worry I've tweeted NIH, written to Collins twice, my daughter has written also. I'm angry in general and it's awful to be turning bitter. It's not who I am. But being bedridden and going down hill with kids is really hard. I know it's hard on everyone. Ive literally broken my ass trying to fundraise in 2018 so I'm disappointed. I'm still bamboozled by the reluctance to jump on board with Klimas. I can't hide my frustration at present. NIH aren't interested in hearing us.
     
    maybe some day, mrquasar and perrier like this.
  19. Ben H

    Ben H OMF Correspondent

    Messages:
    966
    Likes:
    10,745
    U.K.
    I'm sorry you are disappointed @neweimear .

    I'd disagree I am forever putting a shine on things- I am a self-chosen advocate for OMF because I had to hedge my bets like everyone else, and I believe OMF have the resources and team to solve this illness. If you knew my current state, and had any idea what I have been through this year while still trying my best to be a good advocate, I'd like to think you'd choose your words more carefully. I am severe, bedridden but I'm doing my best. I am frustrated as much as anyone and air that to Janet, with how slow the science moves, but I am a realist with this, which is hard but necessary.

    I've said this before but sometimes I really think because OMF is so transparent and so open, with updates or messages, it makes an easy target for frustration. This was a Christmas message, not a ''research update'.

    Thank you for the donations. If OMF don't have any donations, none of this would be even possible. There is hardly any NIH funding, the research would be immeasurably faster with this.

    I don't know anything specifically about Klimas apart from her HPA reset trial.


    B
     
    Last edited: Dec 18, 2018
  20. neweimear

    neweimear Senior Member

    Messages:
    215
    Likes:
    614
    @Ben H a realist as in a treatment in our lifetime? As in next few years...is that realistic or am I Alice in Wonderland? I know we don't know a timeline but what does being a realist mean to you. I'm obviously not a realist, just going off the rails a bit. I'm not being sarcastic, I'm not sure how I'm coming across as I'm wound up. I'm sorry you are having a difficult time too. Is it possible for you to suggest to Dr. Davis or Linda to talk with Klimas. She has system reset for pre and post menopausal women and a men's one. It's all computational work but she has received massive funding from DOD for trials in GWIllness. And Parkinson's are after her now. In fact Parkinson's are funding the first pre menopausal CFS women's trial. She would only work with them if they agreed to fund one CFS starter trial. I think it's important to link in with her. I haven't energy to go chasing Linda/Marilyn or whoever. It was raised before but I don't know if any follow up happened.
     
    perrier likes this.

See more popular forum discussions.

Share This Page