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Sept 10: CDC 'conference call' including Unger and Lipkin

Discussion in 'General ME/CFS News' started by Sasha, Aug 14, 2013.

  1. lnester7

    lnester7 Seven

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    Am I the only one that feels like going and do a anti warm protocol ???? :confused: when i Google that word says that is related to
    Helminth infections
  2. vli

    vli

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    one thing i will say tho is we have official reports saying we suffer GREATER disability and far lower quality of life than even MS patients. sorry that i can't link to any atm. certainly we have video and audio of Peterson and Klimas saying this. the thing is we get WAAAAY less money than the MSers and we suffer way more (sorry we just do). and that's because they have 'biomarkers in MS like plaques on MRI, spinal tap etc and we do not. I keep going on abt this, it all goes back to being RECOGNISED.
    And Lipkin is the person who can actually nail down the cause for us and legitimise CFS; don't we at least want the world to know we have a legit disease??!!!
    Iquitos and leela like this.
  3. Bob

    Bob

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    Beth Unger took 10 days to reply to an email, and therefore she thumbed her nose at us? Have I missed something here? I don't think we can expect instantaneous responses from people who lead government departments. 10 days seem reasonable to me.

    She does? In that case, I'm very impressed with her stated intentions. Whether her actions prove to measure up to these intentions is another matter.

    Let's hope she does do two day testing. But I think that her proposed post-exercise cognitive testing is a worthwhile study and has merit. Cognition will be tested over a 48 hour period, post-maximal-exercise, and I think that's actually very helpful. I think the self-reported fatigue questionnaires might not be much use, but at least they are being used before and after exercise as a comparison. So she is investigating post-exertional malaise, which I think is helpful. I really hope that she also adopts some two day CPET testing as well. I don't see why she couldn't start it off on a small scale, to see how it goes.

    There's absolutely no doubt that the CDC has an enormous amount to prove to patients, but I'm quite impressed with the direction that Beth Unger is travelling, at least in terms of the study she is carrying out. She seems painfully slow to adopt the most helpful tests in this study, but she does seem to be moving in the right direction.

    She's indicated that she might carry out post exercise resting heart rate tests, and is testing morning cortisol levels. She's also collecting DNA samples, but I don't know what she's doing with those.

    I'm not defending the CDC, as they've done immeasurable damage. But it seems to me to have changed. They've got a hell of a lot to prove to patients, but they appear to be carrying out the study that they should have carried out 30 years ago.
    aimossy and beaker like this.
  4. Dolphin

    Dolphin Senior Member

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    There are different levels of MS and there are different levels of CFS.
    Also, a percentage with MS eventually die, in difficult circumstances. So probably ok to make this point here, but one would need to be careful outside of here as it might backfire.
    Valentijn, rosie26, leela and 4 others like this.
  5. vli

    vli

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    OK, I take your point, Dolphin.
    Dolphin likes this.
  6. Dolphin

    Dolphin Senior Member

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    Thanks.
    I might have been a bit quick with the reply after reading the first part of your message.
    I think it would be great to be as recognised as Multiple Sclerosis and think we deserve it, or something close to it anyway. It would help in lots of ways. I agree.
  7. beaker

    beaker CFS/ME 1986

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    Sadly, I know of a couple of cases of long term ME/CFSers ending up w/ MS. And no, they weren't misdx'd from the start. They were classic cases and patients of the orig. drs.
    SOC and Dolphin like this.
  8. Ember

    Ember Senior Member

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    Dr. Unger apparently wrote her negative response to the advocates' July 22 letter on August 30. A response had been requested by August 31. Unfortunately, her email was received only yesterday, more than ten days later, preventing any awkward follow-up questions during her conference call. Dr. Unger explained, “I did send a written response to the letter from the advocates via email to Donna Pearson, who is serving as the correspondent for this group. I have re-sent that message to be sure that it got through. I think maybe something happened in transit...in the translation....”
    beaker and Otis like this.
  9. aimossy

    aimossy Senior Member

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    Getting to the cause of me/cfs I personally feel is going to expose a lot of things for other illnesses as well.
    the pathways involved I feel could uncover so much about the immune system and disease/disorders.
    lipkins work ties well with the microbiome work and professor tates work. the dots are beginning to connect and there is bound to be more that I don't know of because im still learning.
    along with this forum and face book it is important for local community societies all over the world for me/cfs to know of this research and how to get their funding drives directed to the most rigorous promising work that is happening.
    there is power in numbers and a network needs set up btw them all. they estimate 40,000 affected in my small country alone
    I really feel there is promising and extremely important validating research happening that needs good support by this network both for funding and lobbying the governments backing.
    the only way governments will fund is if there is proof of disease and the proof of the cost it is having on them in health/economy.
    these societies could be connected with each other by a representative on a forum the likes of this imagine how much could be generated funding wise.
    just my thoughts :thumbdown:
  10. Dolphin

    Dolphin Senior Member

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    I agree. I wish there was more focus on raising money for research all around the world. Now there are lots of local/state/regional/national groups but only a small percentage raise money for research unfortunately.

    People say that governments don't give enough to research. But in my mind the ME/CFS community (including its wider contacts e.g. family) don't give/raise enough either, although this has improved a lot in the last few years, thankfully.
    Sasha, beaker, rosie26 and 2 others like this.
  11. aimossy

    aimossy Senior Member

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    here we have helped put money into professor tates, im sure they would all be keen all over the globe. how do I post that post onto the fundraising idea thread.im techno challenged, if anyone thinks its valid please feel free to grab this and copy to that thread.lol.
    Dolphin likes this.
  12. Hope123

    Hope123 Senior Member

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    1) MS vs. CFS -- Komaroff study illustrated on AVERAGE, the function of an MS patient is better than a CFS patient. (Also people with depression, congestive heart failure, after heart attack, rheumatoid arthritis are more functional.) This does not mean that every CFS patient has it worse than an MS patient nor the reverse, it just means when looked at as a whole, most CFS patients are worse off functionally than most MS patients.

    http://www.ncbi.nlm.nih.gov/pubmed/8873490
    http://www.cfids-cab.org/cfs-inform/Cfsliving/nunez.etal07.txt

    2) I would encourage anyone interested to learn about fundraising. This can be done merely by googling something like "How to fundraise" or similar. I don't have any fundraising experience either but I try to learn and have been able to raise quite a bit over the past 2 years. Basically, it takes being dedicated to one's cause, willingness to talk to anyone, being able to take rejection with a smile and following up nonetheless, and recognizing you are not asking for money for yourself but for a greater cause. Emphasize the benefits for the donor also -- e.g. feeling good about donating to a good cause and being part of something larger than themselves.

    3) In terms of lobbying, just do it. Write your US Congressman an e-mail, pick up the phone, attend a townhall meeting if you can, visit your local district office. Don't be intimidated. If you don't know the answer to something, tell them you don't know but will find out. If you can't do or say much, at least note that ME/CFS research and care is important to you as a consituent; if the offices don't hear that this is an important issues, they won't care. Staff count e-mails and how many mention an issue.Did you know that $1,000 of lobbying on the federal level generates $25,000 of federal research funds in return? That's huge -- a 25X in return. This is based on a study published in Nature about lobbying and medical research. We don't have the funds to buy a lobbyist but we can try to do it as a group or as individuals.

    Anytime you find an article/ news of interest about ME/CFS, mail it to your Congressional office and specifically the staff person you've had contact with before. You don't have to do this with everything you find but do it every once in a while to make it stay on their radar and add a personal message about why the article/ news is important to you and the ME/CFS community.

    Best tactic short of donating tons of money: volunteer for an office come election time, get to know the staff well and they will be more likely to listen to you.

    A book about citizen lobbying:
    http://www.amazon.com/Bradford-Fitch/e/B004S4CZS4

    Pre-CFS, I have to say I participated very little in politics but if that's what it takes to get funding, then I'll try to do what I can even if it means moving out of my usual areas of comfort.
    snowathlete, Dolphin, jstefl and 9 others like this.
  13. vli

    vli

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    Thanx Hope, that is really helpful and I really would try to do a lot of the things you say except that I'm not a US citizen and don't live in the US. So I am not "represented".

    I will check out that book link though. If anything I wish i WERE American, just so I could actually DO something.

    vli
  14. Daffodil

    Daffodil Senior Member

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    I know of a trial in lupus where they are using monoclonal antibody against HERV and an MS study where they are trying raltegravir against HERV....and I get deathly ill when I stop Viread....and AZT helped me (though was too toxic at the dose I needed)...and they keep finding retroviral sequences.....hope someone is on to something....
    leela and merylg like this.
  15. WillowJ

    WillowJ Senior Member

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    MS is very shortly out of the 'hysteria' sandbox and may still be suffering the effects of that (according to a friend with that disease). It looks underfunded to me. And from the research it looks like the field may not be pursuing new leads. Also I have met neurologists totally unaware of pathology of MS I have read in papers which were many years old still being repeated in new papers.

    They seem to have a lack of medications and a lack of ways to assess their disease status.

    Lack of money can prevent progress. Also lack of ideas and inattention and stigma. Together this makes a stagnant field.

    However, as was mentioned, MS patients do have some treatments which can prolong relapses in some patients. And their disease is mostly recognized as "real" now (as it is, of course). They often have access to assistive devices and assistive care which we often do not have (although I hear it is still hard to get on disability).

    AIDS has had a tremendous amount of money spent on it and has typically very effective medicines but I think not exactly a cure.

    So money can result in lots of researchers flocking to the disease (they need to eat, too), even if it previously had stigma, and great progress being made. People are back at work, living relatively normal lives. Not everyone (and maybe not forever), but many.

    Alzheimers' is fairly well funded and we still know very little about how to diagnose or treat it.

    So yes, it is about more than money.

    But it still takes money to do research. Money and researchers who care and have good ideas and do careful research with good methods. Researchers who will stick around if their first idea(s) don't pan out.
    Svenja, JAH, Dolphin and 2 others like this.
  16. WillowJ

    WillowJ Senior Member

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    you should be able to contact your own Parliament and talk to them about the need in your own country. Depending on what country you are in, there may be specific research initiatives that you can support.

    Additionally, you should also be able to contact my Congress; it's hard to get their email addresses, and most require one to be in their district to use their contact form from their online page, but one can send an internet fax for free; someone around here has a link for that... fax numbers at
    http://www.help.senate.gov/
    http://waysandmeans.house.gov/about/members.htm#2 (sorry these members one would have to search individually)
    http://www.patientsactionnetwork.com/physicians-of-the-113th-congress/

    also the White House takes international comments:
    http://www.whitehouse.gov/contact/submit-questions-and-comments

    When writing to a country other than one's own, could mention something like how research affects/ benefits others in other countries.

    Additionally, even if you cannot give money yourself, you could write an article to your newspaper mentioning whatever in-country or out-of-country private fundraising effort, or mention it wherever else you feel is appropriate.
    Sasha and beaker like this.
  17. Snow Leopard

    Snow Leopard Senior Member

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    (note comments not directed to you in particular)

    It is about action not words. CFS is very much a unique case, it is uniquely neglected for reasons that have not been fully explained. To be aware of the seriousness, but not take action that leads to change, is to be complicit in the continued disempowement of the CFS community.

    It is about having many eyes on the ball.

    The more worthwhile hypotheses that are tested, the closer we are to finding answers that lead to treatments.
    Iquitos, SOC, beaker and 2 others like this.
  18. biophile

    biophile Places I'd rather be.

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    Interesting preliminary results in general. What about this below, has it been discussed yet?

    "Now, looking at these sample pools, we found a virus known as anellovirus. These come in three different types, known as Alpha, Beta and Gamma, a torque teno virus in three quarters of the samples. The sequence was quite variable. I cannot tell you that this is specific for Chronic Fatigue Syndrome. I really can’t tell you what this means."

    http://www.mecfsforums.com/wiki/Lipkin_presentation,_CDC_Conference_Call_9/10/2013

    Wikipedia says (citing PMID 20497515): "Anellovirus species are highly prevalent and genetically diverse. They cause chronic human viral infections that have not yet been associated with disease."

    [Edit: another study found that "About 94% of healthy individuals in Russian population have more than 1000 TTV genome copies per 1 ml of blood.", so I guess it is ubiquitous.]
    Dolphin, Bob, justy and 2 others like this.
  19. Snow Leopard

    Snow Leopard Senior Member

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    I know the CAA get a lot of flack here, but they have done a decent job in recent years funding pilot studies which led to larger grants. Likewise the Judith Jane Mason & Harold Stannett Williams Memorial Foundation in Australia funds more ME/CFS research some years than our national medical research council.

    Funding for pilot studies are one of the key limitations. Most academics practise a sort of corruption "grant creativity" where they borrow funds from other grants to fund pilot studies, but that rarely happens in CFS due to the lack of overlap or willingness of researchers to do so.
    snowathlete, SOC, Dolphin and 4 others like this.
  20. currer

    currer Senior Member

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    I'm afraid Lipkin's initial findings are starting to look familiar to me. I was always told by my immunologist that there was no active virus in ME, but the immune system was subtly malfunctioning and was activated despite there being no pathogen. No causative pathogen that is. The wide variety of viruses associated with ME could just be opportunist passengers, as the immune system is disordered.

    Whilst contributing to another thread, I found this paper. http://www.ncbi.nlm.nih.gov/pubmed/16126512
    Andrew and aimossy like this.

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