1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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$2.1 BILLION for HHS-Recovery/Reinvest Funds

Discussion in 'General ME/CFS News' started by muffin, Dec 6, 2009.

  1. muffin

    muffin Senior Member

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    USA!

    I don't know if this information is out on this website somewhere but I thought I would post it just in case. There is $2.1 BILLION allocated to HHS from the American Recovery/Reinvestment Act. Now, do we believe that any of this money would go for CFIDS research? Do we think that any of this money would go for XMRV research?

    Am I off base here? Thoughts on this please.
    AND, if I'm not off base, to whom should we send this information to and to whom should we possibly complain about this waste of money (if they don't use if for CFIDS). I already sent this on to the Whittemore-Peterson Institute to make sure they were aware of funds. I'm sure they must know but...too much money to let go of.
    --------------------------------------------------------
    -United States Senator Claire McCaskill-
    American Recovery and Reinvestment Act of 2009 Resource Guide
    http://mccaskill.senate.gov/pdf/recoveryguide.pdf

    The following information about funding included in the American Recovery and Reinvestment Act of 2009 was compiled by the Office of Senator Claire McCaskill. This document is intended to provide the public with basic information regarding potential federal assistance and funding opportunities. Please contact the appropriate federal and state agencies for detailed information. Note: Not all applicable programs are included; the following information is subject to change; and additional requirements, restrictions and guidance may apply.
    www.recovery.gov
    Clearinghouse of government information: www.usa.gov
    How to apply for federal contracts: www.fbo.gov
    How to find federal jobs: www.usajobs.opm.gov
    How to apply for federal grants: www.grants.gov
    How to access various federal benefits: www.govbenefits.gov
    http://mccaskill.senate.gov/pdf/recoveryguide.pdf

    Prevention and Wellness Program
    $1 billion was included for the Department of Health and Human Services for evidence based clinical and community prevention and wellness programs, section 317 immunization programs and healthcare associated infections reduction strategies.
    Agency: U.S. Department of Health and Human Services
    Type: Competitive Grants
    Description: Funds will be used to carry out evidenced based clinical and community-based prevention and wellness strategies and public health workforce development activities, including immunization programs and state efforts to reduce healthcare-related infections. The Department has not decided which agencies will take the lead but the CDC is likely to be central to these efforts.
    Purpose: To support state and local efforts to fight preventable chronic diseases and infectious diseases.
    Website: www.cdc.govwww.hhs.gov
    ---------------------------------
    Comparative Effectiveness Health Research
    $1.1 billion was included for HHS, the Agency on Healthcare Research and Quality (AHRQ), and NIH
    Agency: Agency on Healthcare Research and Quality (AHRQ) and National Institutes ofHealth (NIH) - U.S. Department of Health and Human Services
    Type: Competitive Grants
    Purpose: To compare the effectiveness of different medical treatments
    Description: This funding will be used to conduct or support research to evaluate and compare clinical outcomes, effectiveness, risk, and benefits of two or more medical treatments and services that address a particular medical condition. This research will not be used to mandate coverage decisions or impose one-size-fits-all medicine on patients. $300 million will be administered by AHRQ, $400 million will be transferred to NIH, and $400 million will be allocated at the discretion of the Secretary of HHS.
    Website: www.ahrq.gov www.nih.gov
    Phone: (301) 427-1364 (AHRQ)
  2. I imagine there is no reason to believe any more money would be allocated that has any real clout, as long as Reeves is in control and no one is acting on XMRV.

    Maybe in 1 year that will change if the blood supply has to be protected as Scientists will get interested in a new infectious disease.

    The USA spends half the amount on CFS than it does on Hayfever and 1,000 times less than HIV/AIDS :eek:
  3. muffin

    muffin Senior Member

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    USA!
    Need Kathleen Sebelius Email at DHHS?

    Does anyone have her email address? I have spent too much time searching for it and even emailed the webmaster and told them that her email must be out there for the public. Anyone?

    I plan on hitting HER with emails as I have done to Tom Freidan at CDC and many of the Congress people and complain about CFIDS research. Also want to HIT HER HARD on the CFSAC recommendations. Ditto for funding big time.

    I did email Mccaskill several emails with info on CFIDS, CDC, and the new XMRV virus. I told her about the waste of $150M, and possible waste/fraud/abuse in Fed funding with ABT and Emory via Reeves. Will this "HIT"? Don't know but I keep emailing and telling everyone what is going on and asking for an investigation into the CDC and esp. the CDC/CFS/Reeves program.

    Somewhere we have to post all the pertinent names of Congress people, Inspector Generals, GAO, etc. so that we can all hit them time and again. I have to wonder if some of these people have no clue what's really been going on - re. Sebellius.

    Anyway, we need to push where we can to get access to funding for XMRV and CFIDS. I use the possible (probable) tainted blodd with a cancer-causing virus in the nation's blood supply to get attention since this affects ALL AMericans and should scare the daylights out of people - it does me.

    Have to keep hitting. I know, almost three decades and we still get nothing. Makes me insane.
  4. Aftermath

    Aftermath Guest

    NIH, Cattle Cars

    Just remember that Reeves and the CDC are small potatoes with regard to research money/prestige when compared to the NIH. CDC apparently has some say in the first billion, but not the second. Remember, WPI has already gotten one NIH grant.

    The rest of your post is spot on. The paltry amount being spent on this illness is truly sickening. Unless we fight with what limited energy we have, things are never going to change.

    Cort's August 2008 Phoenix Rising had one of the best lines I've ever seen describing our current situation

    Over dinner at the International Symposium on Viruses in CFS two prominent, longtime physicians lambasted the inactivity of ME/CFS patients. One went so far as to state they were basically allowing themselves to be locked into cattle cars without protesting (!) He said that at least he would try and make a run for it.

    Strong words ,yes, but with only 2-4% of diagnosed ME/CFS patients actually contributing to their national organizations they resonate. By not fully supporting these organizations chronic fatigue syndrome (ME/CFS) patients have left their fates up to a national medical agenda that has no place for them. Theyve ceded their power to government officials who have time and time again demonstrated they have no interest in ME/CFS. Whatever anyones justification for not supporting these organizations the result is the same - a loss of power and an enfeeblement in an environment which is hostile to our interests. ​

    Until the start of this forum, my posts in other places urging people to get active were always met with disdain. "We don't have the energy for advocacy" was always the retort.

    Well, until someone does get the energy, we're never going to even get ahead of hay fever with regard to research funding. And without the mechanism behind this illness being elucidated, we are never going to get better.

    We have already seen what we can accomplish with the airing of the 2nd Dr. Oz piece. I know that it's difficult. Nonetheless, we need to keep it up.

    Take two minutes to write a paper letter in support of more funding. Instead of spending money on yet another unproven nutritional supplement you read about on a Web forum, make a donation to WPI.

    Take it from someone who has spent fifteen years throwing good money after bad on dozens of doctor visits and every nutritional supplement under the sun. Hang on to what little money you have and focus your efforts on advocacy for real research to determine the cause of this illness.
  5. blackbird

    blackbird caged.

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    UK

    Recently I've been wondering whether I really have ME or not. (Last couple of days point back to yes, sadly)

    Ever since I started trying to figure out what was wrong with me though, I've constantly read things that have angered me. I'm near as damn it housebound, but have no apparent cognitive symptoms and a computer, and I'm up for the fight. As and when I can at any rate.

    Something I don't think has happened is gathering allies. If no one stands up for us, who will stand up for them when it's their turn. The way benefits are changing in the UK, the disabled are being sent back to the Victorian era.

    When the sick and disabled are all penniless, benefitless and homeless, the cheapest way to deal with them will be nice new 'residential hospitals'.

    Misdiagnosis is already capturing many non ME sufferers in the CFS wastebasket.

    MS, thyroid, adrenal, mitochondria, allergy, cancer, lupus, fibro....... and on and on. All in danger of being caught up in the ME fight as we all get branded with CFS, hypochndria and madness.

    I said it in another thread as an aside, but here it fits better:
    'We're not mad, we're ******* furious!'

    We all need to get together on this. All the knowledge we have can help from our homes and computers, others can take to the streets on our behalf and their own. The UK march is 12th of May. Let's make it a big one.

    New Model Army - Here Comes the War
  6. blackbird

    blackbird caged.

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    I was going to add in an edit, but got too long. I missed this out:

    Whether I have ME or not, I'm part of this fight.

    If I have ME, I may have been denied a vaccine by the years of corruption between insurers and psychiatrists. I have been denied proper timely diagnosis and any proper treatment.

    If I don't have ME, then I've been denied proper diagnosis and treatment for whatever is wrong.

    If I have something that can't be cured I need to know.

    Whatever the case, I'm one of thousands, maybe millions that are seriously ill, but get put through the ringer trying to find out why, only to be dismissed with causing it ourselves, or even when given a real diagnosis, no effective guidance or treatment.

    So that's me committed to help from here on in.
  7. muffin

    muffin Senior Member

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    USA!
    Aftermath: Agree

    I too have screamed and yelled that we ALL need to get on our computers and at a minimum send emails to Congress and other people. I have posted those emails with the link to make it easy. I have told people what they might write. And yet no one seems to be able to do that much. I know we all have cognitive issues - I have severe issues, but if we don't scream and yell and tell eveyrone what is going on than we have only ourselves to blame. Now let me add that when I was first sick with CFIDS 15 years ago, I could not sit up from the bed or make it donwstairs much less sit on a computer and understand how to read and write. It was that bad. BUT, I am seeing and reading people's comments that are obviously not so brain damaged. If they can type on forums like this one, then they can send a friggin email to a Congress person requesting investigations into CDC/CFS or more funding. They can also hit the media and tell them what's going on to push them a little into finding a story to write on. Those media folks are always looking for story ideas and if you feed them a lot of the information and sources to start with you have a better shot of getting their attention.
    I myself like to email Dr. Thomas Frieden (Head of CDC) every week or so. I'm certain he doesn't read the emails but I have gotten some stupid responses from his assistant. I have also put Frieden's email address at the CDC out there for others to email him. Go to the top and don't play games with Wanda Jones at CFSAC - she has no clout whatsoever. I would not even think to bother Reeves as it would be like spitting into the wind. Plus I don't communicate with scum.
    As for money, that is a big issue with the CFIDS sick. I have give money to WPI and in the past some money to CAA (waste of $). But money is a major issue with us all.
    And for reasons I still don't fully grasp, we don't have any real healthy advocates. The AIDS/HIV people had healthy people doing their bidding. Everyone is into breast cancer, even though we outnumber them (not taking shots at breast cancer, I fear it). We have no celeberties either. We got NO ONE to push our agenda and help and support us.
    What is sort of ironic is the comments on www.cdcchatter.net where the moron CDC people actually complain about the CFS sick people and us wanting miracles!! Blew my mind that anyone would say such a stupid thing. Virtual miracles were created for AIDS/HIV with billions of dollars spent. But there they are, the CDC idiots complaining about US and what a problem we are. Piddly little $3million this year and WE are a problem? Kills me.

    So going back, yes, we all must email and scream and yell. Also write in blogs and websites and complain and shoot people to Hillary Johnson's website www.oslersweb.com so that they can read the detailed background on the CDC/CFS history and what is going on with Reeves and his thieving contractors - ABT Associates and Emory MIND-BODY program. That's what I do all the time. Shoot people, including Frieden to Johnson's website. MAYBE one of those putzes might read her stuff and finally "get" why we are so damn mad.

    Finally, the blood supply is starting to shake them all up and it should. I use that as a means to get attention since it affects everyone and is criminal. A cancer-causing virus has been in the nation's blood supply for more than three decades (who knows how long really) and the CDC had some understanding of that (DeFreitas and others) and yet nothing was done? Now THAT should and seems to be getting attention directed indirectly (hey, it's 5am) at CFIDS.

    Enough from me. People, please email the Congress people I have put out there and request investigation into CDC/CFS/Reeves. THINK about who else would be interested in this whole thing, media wise, etc. Crying and complaining to eachother serves no real purpose, just venting. Complain to those that can make the difference and do have the money to disperse.
  8. Marco

    Marco Old blackguard

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    Near Cognac, France
    "Over dinner at the International Symposium on Viruses in CFS two prominent, longtime physicians lambasted the inactivity of ME/CFS patients. One went so far as to state they were basically allowing themselves to be locked into cattle cars without protesting (!) He said that at least he would try and make a run for it."

    Absolutely.

    I've despaired over the years of MDs who try to diagnose and treat every symptom without considering the whole picture or who say they don't know what (if anything) is wrong or how to treat it - but don't dare go near those alternative therapists and try to help yourself. I'm fed up with ME charity newsletters whose front covers feature fey young girls hugging teddy bears or TV shows on 'chronic fatigue' featuring vivacious young ladies who had fatigue for a few months but are much better now.

    I've nothing against fey or vivacious young ladies per se - but where are the 6' 4", 200lb guys who were knocked off their feet and can't work? Probably wouldn't be selected for interview as they wouldn't fit the public perception. I got fed up running to my GP asking him to do 'something' to help me stay working until it was too late. Fed up that they set up a 'chronic fatigue' clinic in Belfast which turned out just to be a clinic that screened for other 'organic' causes of fatigue and that the only clinic that provided treatment for ME was run on a voluntary basis by a MD with ME and has now closed. Now I'm fed up with my French GP telling me he doesn't believe in ME.

    I fear we lost the battle for any public sympathy long ago when ME became CFS. So be it! But in today's recessionary times, what government can ignore the economic cost of ME - estimated I believe at $20 billion per annum in the USA - compared to the costs of proper research.

    We have been either too passive or at times too strident. Both are understandable given the circumstances. But we can be assertive. We have every right to be taken seriously and treated appropriately. Politicians are the key and the only pressure politicians feel is from negative publicity. As has already been said, I've spent too many years and too much money following up every supplement and alternative therapy out of sheer desperation to do something. Better to have spent the time and money hitting the decision makers where it hurts.

    First suggestion. Surely most TV science programmes would be interested in the story of the third exogenous human retrovirus and the fact that its in the general population and causing cancer, autism etc and ME. Perhaps they might even be interested in how governments have responded to this knowledge over the years?
  9. starryeyes

    starryeyes Senior Member

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    Bay Area, California
    I wrote my Congressman and both Senators and told them about XMRV in the blood supply. LET'S GO PEOPLE! :)

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