1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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FM sufferers dont miss this--A really good study

Discussion in 'Latest ME/CFS Research' started by Gerwyn, Feb 21, 2010.

  1. Gerwyn

    Gerwyn Guest

     
  2. julius

    julius Watchoo lookin' at?

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  3. Alesh

    Alesh Senior Member

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    In my experience citalopram (SSRI) was the first really helpful medicine I took. The improvement was dramatic but it didn't lead to full recovery. I only regret that I didn't start to take it sooner. If you "google scholar" antidepressants and cytokines you will find that many antidepressants have potent anti inflammatory effectiveness against many cytokines that are arguably involved in ME/CFS pathology.

    Next, many antidepressants have neuroprotective, nootropic and neurotrophic effects.

    Look at this commentary with a bit overrated title:

    http://www.physorg.com/news185727145.html


    And of course let's not forget that the first MAOI was a drug against tuberculosis. I think it is a common thing that some drug is effective against many different disorders, e.g., valproic acid is anticonvulsant, mood stabilizer and potential anti HIV medicine or amfonelic acid is both an antibiotic and stimulant. :Retro smile:
     
  4. Alesh

    Alesh Senior Member

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    And quickly to milnacipran: From a private communications with some psychiatrists I learned that milnacipran is not effective against depression at all. But from the commentary I posted a link to in my last post it should substantially promote neurogenesis so I am going to give it a try.
     
  5. Gerwyn

    Gerwyn Guest

     
  6. julius

    julius Watchoo lookin' at?

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    Thanks for that Gerwyn. It's a lot to digest and very hard to read ;)

    The fog is rolling in too.

    I hope you are right, because it is due to this sort of corrupt behavior that I have lost all faith in humanity. I'm not quite convinced yet, but I'll go over what you wrote.
     
  7. julius

    julius Watchoo lookin' at?

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    I think I see the problem here.

    The point i'm talking about in the New England Journal of medicine has nothing to do with scatter/funnel plots. Compensating for publication bias is not an issue, because the paper is specifically about publication bias.

    "Among 74 FDA-registered studies, 31%, accounting for 3449 study participants, were not published. Whether and how the studies were published were associated with the study outcome. A total of 37 studies viewed by the FDA as having positive results were published; 1 study viewed as positive was not published. Studies viewed by the FDA as having negative or questionable results were, with 3 exceptions, either not published (22 studies) or published in a way that, in our opinion, conveyed a positive outcome (11 studies). According to the published literature, it appeared that 94% of the trials conducted were positive. By contrast, the FDA analysis showed that 51% were positive."


    It's a simple matter of adding up all the studies done (74), seeing that only the positive results were published (37) and the negative results were not published (22) or misrepresented (11). And a couple were 'lost'. Very straightforward.


    The meta analysis, dealing with data sets is not what I was referring to, and was not the main point of the article;

    "Separate meta-analyses of the FDA and journal data sets showed that the increase in effect size ranged from 11 to 69% for individual drugs and was 32% overall."


    But, anyways, I think this will just keep going on forever if I don't just stop. So I'm out.
     
  8. Gerwyn

    Gerwyn Guest

    The decision that there was a significant difference was based on opinin and whether this selection bias was real or just a chance observation.They also mention that they referred to studies that were ubpublished when technically they had been published.They included phase two trials as unpublished which is frankly rediculous because they never are! " published in a way THAT IN OUR OPINION conveyed a positive outcome" The science stops there!
     
  9. starryeyes

    starryeyes Senior Member

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    I came across this Petition:

    Public Citizen Petition to FDA: Dangerous Fibromyalgia Drug Should Be Pulled From the Market

    Medication Has Limited Efficacy, Risky Effects


    WASHINGTON, D.C. – The fibromyalgia drug Savella (milnacipran) should immediately be taken off the market because its dangers outweigh its benefits, Public Citizen said today in a petition to the Food and Drug Administration (FDA). The European regulatory authority, the European Medicines Agency (EMEA), rejected the drug’s approval for fibromyalgia in July 2009, stating that its benefits were “marginal” and “did not outweigh its risks.” This was shortly after the FDA approved the drug in January 2009. Since the drug went on the market in the U.S., approximately 250,000 prescriptions have been filled, with doctors writing more prescriptions every month.

    In two randomized clinical trials, Savella, also known by its generic name milnacipran, was found to increase blood pressure, heart rate and suicidal thoughts, Public Citizen’s petition said. Among patients who had normal blood pressure at the beginning of the study, 19.5 percent of those who took Savella developed hypertension, compared to 7.2 percent of those on a placebo.

    “Because Savella is a drug that produces only a marginal effect on pain, the main problem for which patients seek treatment, and has the potential to be quite dangerous, it is clear that it should not be sold,” said Dr. Sidney Wolfe, director of Public Citizen’s Health Research Group. “The FDA never should have approved Savella for fibromyalgia and should now immediately order the drug company to remove it from the market before large numbers of people suffer serious harm,” Wolfe said.

    To Sign the Petition: http://www.citizen.org/pressroom/release.cfm?ID=3029
     
  10. Gerwyn

    Gerwyn Guest

    I think the study was 2010 the benefits did not appear marginal but of course the european agency did not have this info a great many antidepressants cause hypertension It is hard to see if these people have skills greater than those of theFDA I note they attack the hundred top selling drugs branding them as unsafe
     
  11. starryeyes

    starryeyes Senior Member

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    Gerwyn, can you show me where they are "attack[ing] the hundred top selling drugs"?

    Here's some more info about Public Citizen:

    Gerwyn, I know you originally posted this to show that FMS is not Somatiazion or Depression which is cool. I just thought I'd share this Petition as I happened to come across it today.
     
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Yeah, I have seen this I will not be signing it.

    I used to like Public Citizen until I found out where they stand on other issues. I do not need big brother "protecting" me. Like they have done so well with CFIDS?!! Why do we need the FDA anyways? They stop so many drugs that could possibly help the sick. I just saw Stossel on FBN and think he makes some good points. I believe I am a Libertarian and tired of people giving away my freedom to the Govt! The Gov't is bloated and it needs to be taken down in size!

    Public Citizen is also pushing for Crap and Trade, that should be really good for us? NOT! Just more regulation and taxation without representation! I mean look how they want to take away our supplements now also?!

    If you watch the lamestream media, you will think that Global Warming is settled. Luckily I get my news from other sources and have not been blinded by the barage of settled science. I mean it snows more in DC and this proves Global Warming and then it is warmer than usual and this helps corroberate that Global Warming, so if you are sceptical you are a flat earther or something. I mean to believe that the Earth's climate is going to be static is ridiculous, of course there are going to be hotter and colder years, months, days etc... This issue is not passing the smell test, I used to believe but am more sceptical now that the Science has not been transparent. More of a political issue now, to much political influence in this arena, seems like an agenda is being pushed and it is not going to be good for us pee ons!

     
  13. IntuneJune

    IntuneJune Senior Member

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    I tried to get multiple quotes going, but cannot figure it out and also just got a low battery warning on my notebook, must talk fast. I bolded (I hope) the words that really took my heartbeat up a notch. I so agree with these.

    Am going to end this now so I don't lose this post.
     
  14. IntuneJune

    IntuneJune Senior Member

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    US Political scene---Who are you really

    The parties of the past are not the parties of the present. Unfortunately many Americans have not been able to keep pace with these changes and vote on past beliefs.

    Sound bites on the evening news are misleading. Deeper studies need to be done, and done by the voter. Time consuming, yes. Unfortunately if the citizens of the United States do not make the time, we will lose the country we were born into.... with the freedoms we have enjoyed.

    The more I paid attention to the deeper facts and not the sound bites, the more I learned, and realized I am not necessasrily a member of the party I believed I was.

    Why did I change my mind about mainstream media???? The first tour to Iraq my son made, he came home for his two week R&R and we were watching the "news" together. His statement, "That is not the Iraq I know." He has spent two and a half years there. His opinion of our "news" coverage did not change.

    My news watching changed venue and I try, try (brain-fog being high on the list of symptoms) to eek out the WHOLE truth about the issues.

    No matter what side of the issue you stand, I would hope everyone would understand that our government -- for whatever reason, cannot accomplish anything efficiently, any business they run takes more money with less efficiency than the private sector.

    June
     
  15. julius

    julius Watchoo lookin' at?

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    Gerwyn,

    I'm not trying to start this discussion up again, but I just noticed something and wanted to make it clear. The study I was defending didn't actually come out as a link in my original post, so it might have looked like I was arguing about the second study, which I only included as further support, but didn't read too closely.

    So, just for clarification, this is the study that I was discussing,
    http://content.nejm.org/cgi/content/abstract/358/3/252

    Don't know if that changes anything, but when I realized the mistake I really wanted to bring it up.
     
  16. Gerwyn

    Gerwyn Guest

    Hi Julian I thought we were missing each other i just couldnt figure out how The NEJM study was fair and balanced the other one was not so we were at cross purposes.It wasnt the conclusions in the other paper that bothered me it was the science
     

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