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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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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. Daffodil

    Daffodil Senior Member

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    maybe a "bed-in" like john lennon did
     
    heapsreal likes this.
  2. SOC

    SOC Senior Member

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    True. But if we can't get the numbers, that's our own fault to some extent. There are a lot more of us than there were HIV patients back in the days of the protests. We'd need a level of will that we may not have at the moment. It would also help if we had healthy supporters, which we are lacking in any significant numbers. We need a turn-around in our public relations before we can get the kind of support we might need to sit on Washington. ;)

    Or we just suck it up, accept the consequences, and do this freakin' thing! [The crowd cheers. Flags wave.]
     
    snowathlete and aimossy like this.
  3. SOC

    SOC Senior Member

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    I'm not sure I like the inferences people could (and would) make about us lying around in bed. Looking miserable as hell, but sitting upright in wheelchairs might be more effective.

    I'm not really serious about a sit-in on the Capitol steps. If someone organized it, I'd be there, but truthfully I don't see that we have the organization or the whatever-it-takes to make it happen at this time. We don't even have an major advocacy organization that handles media or events yet.
     
  4. Nielk

    Nielk

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    I think the time is ripe for a protest. I don't know how else we can be heard. Even if its only 500 of us. We would probably need wheel chairs. I'm sure we could galvanize some family members and friends to come along. We need to start taking charge of our destiny.
     
    RL_sparky, medfeb, Kati and 1 other person like this.
  5. Firestormm

    Firestormm Guest

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    Did you see they staged a mass 'all fall down' outside Parliament in London the other month for ME? Not sure what impact it had really - always hard to tell - but it got across the point I think.

    [​IMG]
     
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  6. SOC

    SOC Senior Member

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    Since my future son-in-law recently moved to DC, I'm pretty sure I could get four people there. ;)

    Since we have top researchers begging for research money, this probably is the time to do something big. If Lipkin et al could come through with something attention-getting, even if it's far from The Answer, that would be a huge help.

    [Getting all psyched to struggle down to the basement to paint a sign that says,
    I'm NOT fatigued, I'm SICK! ;)]
     
    Bob, RL_sparky, medfeb and 2 others like this.
  7. Nielk

    Nielk

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    I like that. An ME collapse!
     
    ahimsa, Bob, Firestormm and 1 other person like this.
  8. aimossy

    aimossy Senior Member

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    I am really wondering if the time is now ripe for all me/cfs societies around the globe to have some way of communicating with each other in order to organise support funding drives/awareness drives.
    we have now got researchers working for us I think its time we start organising to help them.
    im just throwing the idea in and wondering how it could be started.
    I think the key is start small and it will build.
    a forum for representatives of each society in a few countries online.
    there would have to be clear guidelines for the purpose of it.
    for example: to keep these societies abreast of current rigorous valid research globally.to co-ordinate world me/cfs day awareness/community donation drives.inform each other of whats going on in these societies that is useful.
    each society can choose which studies they might donate/if at all.
    10$ from every person who has me/cfs in a few countries equals $$$$$
    these funding drives could be a matter of sitting outside a supermarket/shopping mall with a sign/hand out cheap phamplets.happens a lot here and people do donate.(no need to do tiring sausage sizzles)
    would take someone well known to start and make approaches/offer the idea/ and support to set up online network.
    one person I can think of to give it the start up but its too cheeky to mention cos they prob already done enough.
    am I being tooo ambitious.
    I would also just donate online myself but I think we need a bigger pool and get the word out now.....this shit is rea!l do you know someone who has this? probably! please help out? I do think its time.
    we could get heaps of countries societies involved..USA,UK,Ireland,Denmark,Sweden,Spain, Germany,New Zealand............?????
    maybe too ambitious but I do think its time to be talking to each other more with respect to getting organised and think about what we can all do together to strengthen us.
    :)
     
    Nielk likes this.
  9. Dolphin

    Dolphin Senior Member

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    I read in one of the magazines recently they were hoping for media coverage but didn't get it. (That's what the story said; maybe there was a tiny media outlet somewhere that did cover it).
     
  10. Dolphin

    Dolphin Senior Member

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    I generally agree with the general idea.

    However, I think we don't necessarily need a new infrastructure to do it: if individuals can tell groups of good research, hopefully they will start fundraising. A lot of groups will already be connected to some sort of network to try to keep up-to-date. I don't think there needs to be a new infrastructure before people start fundraising like this.

    A few people have told me this sort of fundraising doesn't happen so much in the US. But it does certainly happen in some countries. In Ireland, this has been used to raise money for research.
     
    aimossy likes this.
  11. aimossy

    aimossy Senior Member

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    ill just make donations to invest in ME then.do that tomorrow.:)
     
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  12. Sasha

    Sasha Fine, thank you

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    Hi aimossy - just wondering if you can format your text to make it clear where paras and sentences start, by starting new sentences with a capital letter and leaving a space between paras? You're maybe having trouble because you're using a phone or something, though! :) Or maybe this is the new fashion and I'm just old. o_O
     
    aimossy likes this.
  13. aimossy

    aimossy Senior Member

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    LOL!!
    Sorry,
    It,s actually my brain. It uses less energy for me to be slack like that, so it is easier for me.
    However it is obviously troublesome for others to read.
    I will try harder.;)
     
    ahimsa, rosie26 and Sasha like this.
  14. Sasha

    Sasha Fine, thank you

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    Thanks! That's good of you - I'm sorry it's harder work. :)

    But quite a few on here have cognitive problems that affect their reading, so the clearer you can make it, the more readers you'll get, and that was an interesting post!:thumbsup:
     
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  15. snowathlete

    snowathlete

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    We could also erect a huge screen there and throughout the day cycle through live skype shots of thousands of patients in their beds/chairs, whatever.

    I think these ideas should be ambitious, and you just need determined people, or even a single person, to make these things happen. Things take time and effort, and energy, and because we are sick, they often take longer than we'd lilke, but ultimately, if people want these things then they have to get involved. If people arent already doing it they just need to start doing it themselves, invite others to join, be determined and make it happen as quickly as health allows. Progress does occur this way, but it requires people to take action.
     
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  16. Sasha

    Sasha Fine, thank you

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    That's a great idea - we need to use the net to get around the fact that we can't protest in person. Great idea.
     
    aimossy and snowathlete like this.
  17. Ember

    Ember Senior Member

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    So was Dr. Snell referring to the published papers, and he describes the 2013 paper as a replication study with “slightly different results.” The 2013 study confirms the diagnostic utility of the Stevens Protocol.

    The ME Primer was published less than a year ago, but it states that it will be updated when appropriate. The timing of an update is for the Panel to decide.

    The Primer references the 2007 study as well. Dr. Unger is fully aware of the 2013 CPET research results. She spoke immediately after Dr. Snell at the FDA workshop.

    Dr. Unger has chosen to use post-exercise online cognitive testing to measure neurocognitive impairments, one of four symptom categories included in the Neurological Impairments domain of the ICC:
    You can hope perhaps that some future update of the ME Primer will include online cognitive testing here:
    Dr. Unger has slipped her own intransigence behind a more compelling event.:ninja:
     
  18. Ember

    Ember Senior Member

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    Here's Cort's take on Dr. Unger's proposed cognitive testing:
     
    aimossy likes this.
  19. Nielk

    Nielk

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    The further danger of this post one day test cognitive and fatigue patient assessment is that even if they will report abnormalities, the study can claim that these are subjective! (back in our face)
     
    aimossy likes this.
  20. Bob

    Bob

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    And what exactly does "slightly different results" mean in terms of the scientific data?

    I recommend that you read the PR article. It's very informative:
    http://forums.phoenixrising.me/inde...matic-drop-in-me-cfs-exercise-capacity.24485/

    But you haven't provided any evidence for this assertion, beyond quoting Dr Snell's anecdote that the results are 'slightly different'.


    I don't think the 2013 study "confirms the diagnostic utility of the Stevens Protocol."

    I can't find much specific into re the Stevens Protocol, but it seems to be based on "an inability to reproduce values for oxygen use on the second test at both peak exercise and at the anaerobic threshold".
    http://www.research1st.com/2011/11/18/pfl-testing/

    So that means the Stevens Protocol is, or was, based on VO2 peak and VO2 AT. (AT = anaerobic threshold).

    But the 2013 study did not yield significant results, for VO2 peak, as far as my interpretation goes.
    Instead, the 2013 study demonstrated that Watts output at anaerobic threshold (VTWL) gave highly significant repeat test results.

    And, actually the VTWL results are much more useful than the VO2 peak results because they are more objective.
    (The anaerobic threshold is a more objective measure than peak exercise.)

    I've just re-read the PR article, and my own interpretation of the 2013 results is confirmed in it, including in this question put to Dr Snell:
    There's no point in promoting the VO2 peak repeat CPET test if it doesn't provide meaningful test results.

    However, reading the article, it is clear that Dr Snell still sees merit in peak testing:
     
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