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Stony Brook's Friedberg on $600,000 Grant for Studies in Chronic Fatigue Syndrome

Discussion in 'Active Clinical Studies' started by Ember, Oct 31, 2011.

  1. Ember

    Ember Senior Member

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    http://sbpress.com/2011/10/stony-br...rant-for-studies-in-chronic-fatigue-syndrome/

    A self-management study for Chronic Fatigue Syndrome, or CFS, that is receiving a grant of approximately $600,000 from the National Institute of Health is lead by Dr. Fred Friedberg, who is a research associate professor in the Applied Behavioral Medicine Research Institute at Stony Brook University.

    The project, titled Efficacy of Home-Based Self-Management for Chronic Fatigue, focuses on establishing a cost effective program in which patients with CFS can apply individualized, ability-based treatments to help themselves feel and function better.

    Chronic Fatigue Syndrome is a medically unexplained illness. Dr. Friedberg said in an interview that this means Were not really sure what causes it, and there is no definitive test for it. However, there is consensus about several of its symptoms, such as six months of persistent fatigue not alleviated by sleep or exercise, headaches, flu-like symptoms and post-exertional malaise.

    According to Dr. Friedberg this last symptom, meaning prolonged and/or delayed exhaustion after performing an activity, has been under-emphasized in the past, and may, in fact, be one of the illness defining characteristics.

    Besides the substantial physical limitations caused by the illness, which may lead to the inability to hold a job, another frustration of patients with CFS is the skepticism of family, friends and doctors alike. People are often treated dismissively by doctors, and so there is little help available to them.

    Dr. Friedberg clarifies that patients suffering from these symptoms often do not look sick. They may have their lab tests come back normal, resulting in doctors telling them that they are healthy. If the doctor says youre OK, everyone believes that youre OK.

    Additionally, patients with CFS are often told by others that a simple change in diet, or attitude will reverse the symptoms. These types of advice are rarely helpful.

    The tendency to disbelieve or blame the patient for his or her suffering is one of the reasons why Dr. Friedbergs study is so important now. The fact that the program is purely self-management sets it apart from other related studies. Based on a recent survey of CFS patients, it was clear that a large number desired this kind of self-applicable treatment.

    People who are home-bound usually have their own schedule, Dr. Friedberg noted, They dont want to try something that may flare their symptoms.

    This is where the convenience of a home-based treatment is helpful.

    Some of the treatments in the program are active relaxation, to help with managing stress and symptom relief, pacing activities to keep patients from doing too much or too little, and low-level activities, which may include leisurely walks of 30 seconds to five minutes.

    The idea is to begin at a level that will not exacerbate the symptoms and gradually move on to higher levels of activity. Dr. Friedberg believes that this process the will help to develop a tolerance of activity.

    If the the program is successful, he hopes to make the treatment more available to doctors and insurance companies, who might cover the program.

    Dr. Friedberg welcomes anybody who wishes to contact him about his study; he can be reached at 631-632-8252.
     
  2. Nielk

    Nielk

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    I'm very confused after reading this what this study is all about?
    Is it so that insurance will pay for some meditation tapes and someone will come in to show me how to walk for a few minutes?
     
    ggingues likes this.
  3. Ember

    Ember Senior Member

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    $600,000 is a big chunk of what the NIH sees fit to spend on us...or on CFS.
     
    WillowJ likes this.
  4. Boule de feu

    Boule de feu Senior Member

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    Dj vu? Isn't this Bruce Campbell's self-help program?
    http://www.cfidsselfhelp.org/
    I took his course a few years ago and it did help me manage better. I realized that I needed to take very good care of myself.
     
  5. Nielk

    Nielk

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    $600,000 to come to this same conclusion?
     
  6. xchocoholic

    xchocoholic Senior Member

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    Ugh !!! This is getting ridiculous ! The level of functionality of each pwc is determined by this illness not by the patient. This doctor doesn't even know about all the physical findings in pwcs because he states that our labs are normal .. Sure, if you run all the wrong labs we look healthy.

    Does anyone know who at the nih decided to spend $600,000 to study something that we all know isn't going to help us ? Is this a case of having freinds or family at the nih ? Is there a way to stop this grant ?

    I'll be posting this on my facebook as another example of our government's health care incompetence.
    Sadly nothing new in politics ... Tc .. X
     
  7. floydguy

    floydguy Senior Member

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    What a waste of money. This sounds like the equivalent of helping abused women or children deal better with their abusers. Instead of getting at the direct cause (ie ending the abuse) this program "helps" people deal with the agony. No thanks. I think people should consider calling Dr. Friedburg and the NIH and tell to only fund things that get at the root cause of the disease. Or at the very least programs that legitimize this illness, not ones that perpetuate this disease as something that as no meaningful biomarkers.
     
  8. Nielk

    Nielk

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    Fred Friedberg is a psychologist who works in the Department of Psychiatry and Behavioral Medicine.

    I guess if you are a Psychologist or Psychiatrist, you have a much better chance to get funding from the NIH.
     
  9. xchocoholic

    xchocoholic Senior Member

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    This says that dr. friedbrain works at stony brook ... Oops, please excuse my typos .. ; ) Are you saying he.s connected to the NIH somehow ?

    This article stated that a survey of cfs patients thought this would be helpful. I doubt they explained to these pwcs how the money spent teaching them to walk leisurely for 30 seconds to 5 minutes would be deducted from funds that could be used to find real treatments for cfs. Who here couldn't have figured
    out for themselves that strict bedrest would cause deconditioning ? Ugh ..

    A reasonable home treatment plan for me would include a maid, chef and a gopher. Try getting insurance to pay for that. Lol ..
     
    Francelle likes this.
  10. Hope123

    Hope123 Senior Member

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    I hope people will consider looking beyond titles to see what someone's work is about before they dismiss it. Being a psychologist or psychiatrist doesn't mean someone can't do good work within ME/CFS. As some examples, Lenny Jason and Ellen Goudsmit, experts in pacing, are both psychologists and Eleanor Stein in Canada, who has tried to educate psychiatrists that ME/CFS is not a psychological illness, and Alan Gurwitt, who is involved in the longtime Massachusetts CFIDS patient group, are both psychiatrists. Surely, you would not want NIH not to fund some of these researchers based solely on their background?

    I would suggest people watch Dr. Friedberg's 20-minute talk at NIH before they jump to conclusions. It starts at about 97:00 on this video:
    http://videocast.nih.gov/summary.asp?Live=10114

    [Note I am not Dr. Friedberg nor do am I affiliated with his research program.]

    I also have found Bruce Campbell's program to be useful; however, that is not a formal study. You cannot take stories from people, no matter how good, and counteract the claims of CBT/GET effectiveness by using anecdotes. Hence, studies by Dr. Jason and now Dr. Friedberg on pacing are needed to counteract such claims and show pacing is helpful for people with ME/CFS.

    In addition, what NIH funds are does not fund is does not depend on Dr. Friedberg. Researchers like all those I mention above submit their studies to NIH and NIH determines whether they want to fund it. If you want to hear about money going to the really wrong places in ME/CFS research, listen to the patient testimonies this upcoming CFSAC.
     
    SOC likes this.
  11. Nielk

    Nielk

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    If the NIH would be showering monies on hard core studies for ME/CFS to find biomarkers and treatments that work, I would not be upset for them to send this additional funding for coping mechanisms. Why is there no funding for Ampligen or GcMAF? both have shown a remarked improvement for a percentage of patients. Why is it working for them and how? Why not have studies for Rich's protocol? There are so many avenues that I'm sure I'm not even aware of that needs to be studied. I want to get better, not learn how to live with it for the rest of my life. I have nothing personally against Fred Friedberg Phd., I'm sure he wants to help the chronically sick but I want treatment and cure. There are many patients who have been sick fo 30 years and you want to teach them now how to cope with it for the remainder of their lives? I want them well and being able to enjoy the remainder of their life.
     
  12. Hope123

    Hope123 Senior Member

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    It is not usual for NIH to bestow money on projects if the researchers intimately involved with the projects do not apply for the grants available. We can talk about how there is a limited amount of money, how grant review committees are prejudiced, etc. but that is besides the point of whether any of these folks, Hemipsherix, Rich, etc., have even tried to apply for a grant. NIH, rightly so, has to get an inkling of what promise a project has before it will give money.

    IMO, having looked at some papers on methylation and the data that is out there on Hemispherix, I am not impressed. A few extra seconds on a treadmill test doesn't mean that much to me clinically. My impression has been that Hemispherix overstates their results with not a whole lot of meaningful evidence. I agree some people have and could benefit from Ampligen but let's get better data to find out which group it is and tamp down on the hype. A lot of ME/CFS stuff, if you really dig into, and for me, as a scientist, come at it with the same degree of rigor I expect from non-ME/CFS studies, doesn't pan out well. I try to read the original papers whenever that is possible.

    It's a personal choice but my goal is to get overall much more funding for ME/CFS in general rather than focus on individual studies. If people do want to focus on individual studies, as I said earlier, listen to the testimonies at this year's CFSAC. You'll hear about studies that took much more money than Fred Friedberg's with even less benefit for ME/CFS.
     
    WillowJ likes this.
  13. richvank

    richvank Senior Member

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    Hi, NeilK.

    Thanks for thinking of my work. I'm not eligible for NIH grants, because I'm not affiliated with an institution. I'm looking into possible collaborations with some colleagues who are, but there is nothing concrete as yet.

    Best regards,

    Rich
     
  14. xchocoholic

    xchocoholic Senior Member

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    My problem with this is that it's been done. All of the info I've read from each CFS researcher has provided patients with info on how to cope with this illness. And it's a total waste of money to rehash this. Especially since there are so many other avenues that need to be researched but haven't been.

    I wouldn't care so much about this but I had a 2 hour seizure back in March where my lungs stopped working sporadically and I had to force air in and out of my lungs in order to breath. I was wearing an oxygen mask and the medics told me to stop this because I was going to hyperventilate ... duh ... It was my first and hopefully my last. BUT it showed me how fragile life is ..

    I'm asssuming this is from my dysautonomia. Patients with ME are known to have dysautonomia and if this is where this is going we need to know.

    tc ... x
     
  15. Nielk

    Nielk

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    How do you get more data from these existing treatments unless you have money to study them further. Ampligen is a controvertial topic. I'm not sure why the FDA is allowing a phase III study but because of lack of FUNDING, it has to be an open study. My Specialist in NY is one of the doctors running this study but who can afford it? I personally know of a few people for whom this drug does magic. It's a lifeline for them. It's true that after a long time being off it, they have to go back on. Why is this? Obviously it needs more studying. It's been in the works for so many years already. Why hasn't this been approved yet? It reminds me of Burzinsky and what the FDA and Pharma did to him to silence his discovery of the cancer treatment antineoplastons.
    What about GcMAF? My doctor is running a study for that too. I can't afford it but a majority of his patients who are on it are feeling 90% better! I would say that's pretty impressive.
    You make it sound like "all you have to do is ask for the grant and you'll get it". Who are you kidding.?
    Why do you state that this is besides the point.
    Are you kidding? do you work for the NIH?

    What do you mean by:
    So, if Hope123 will ask the NIH to give general funding for ME/CFS, they will listen? What the? Who will decide how this money will be spent?

    You are obviously an insider that you know this, even though the agenda for the meeting has not been posted yet.
    This fact is going to make me feel better? They wasted money on worse studies therefore it's great that they are throwing $600,000 at Dr. Friedberg?
     
  16. Nielk

    Nielk

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    Rich, I'm glad to hear that you are working on this. That would be amazing if you can get a grant from the NIH to study your protocol further.

    Good Luck!

    Nielk
     
  17. Andrew

    Andrew Senior Member

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    Dr. Friedberg is president of IACFSME and has consistently gone to bat for us. As for the topic of the study, I guess this is nowhere near as exciting as something that involves drugs or microbes. But considering how long all of us have been ill, maybe it's good to have a study about coping with the illness.
     
  18. Hope123

    Hope123 Senior Member

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    Nielk,

    I'm a patient, just like you, only I have a background in science and have friends and past co-workers who have dealt with NIH.

    I can understand your frustration with NIH; I share that. It's much harder now to get a grant than it was 20 years ago from what I hear and researchers within the ME/CFS have a harder time for the reasons I put in my above post. I don't apologize though for the view that NIH has to evaluate grants, ME/CFS or not, carefully; NIH could do better if they had more money in general but realistically, there will always only be a finite amount of money and it must be spent well. The definition of "well" is debatable of course, as this thread illustrates.

    But the reasons why I put that point aside is because you mentioned Hemispherix and Rich specifically. I don't know if either party has submitted a grant to NIH and this is something they have to tell us if they wish us to know since one cannot find out who has submitted grants. The process is confidential partly to protect the possible intellectual property of the researchers. If a grant is given though, some info on the project must be made public.

    One thing you can ask your MD to do, if he/she is seeing such spectacular results with GcMAF is to write it up in a medical journal, even if it's only based on a few patients. That way, others can read about it in the scientific community and consider doing a study on it if your MD doesn't want to do a study. Otherwise, he/ she could consider applying for an NIH grant. Below are the types of entitities/ individuals who can apply for a grant, in this case, one of the current ones targeted to CFS. It's not only academic groups; small businesses, non-profits, for-profit organizations, faith-based/ community based orgs can also apply. Government small business association (SBA) grants can also be applied to by individuals for certain scientific projects with commercial promise.

    I am an 'insider' only as far as I try to keep up with what is going on in the patient advocacy community. My first post about testimonies -- I referred to patient testimonies, not anything in the CFSAC agenda. I do keep in touch with other patients so I have a sense of what they will be talking about.

    ***************************************************************************************
    http://grants.nih.gov/grants/guide/pa-files/PA-08-246.html

    . A. Eligible Institutions

    The following organizations/institutions are eligible to apply:

    Public/State Controlled Institutions of Higher Education
    Private Institutions of Higher Education
    Hispanic-serving Institutions
    Historically Black Colleges and Universities (HBCUs)
    Tribally Controlled Colleges and Universities (TCCUs)
    Alaska Native and Native Hawaiian Serving Institutions
    Nonprofits with 501(c)(3) IRS Status (Other than Institutions of Higher Education)
    Nonprofits without 501(c)(3) IRS Status (Other than Institutions of Higher Education)
    Small Businesses
    For-Profit Organizations (Other than Small Businesses)
    State Governments
    Indian/Native American Tribal Governments (Federally Recognized)
    Indian/Native American Tribally Designated Organizations
    County Governments
    City or Township Governments
    Special District Governments
    Independent School Districts
    Public Housing Authorities/Indian Housing Authorities
    U.S. Territory or Possession
    Indian/Native American Tribal Governments (Other than Federally Recognized)
    Regional Organizations
    Non-domestic (non-U.S.) Entities (Foreign Organizations)
    Eligible Agencies of the Federal Government
    Faith-based or Community-based Organizations
    1.B. Eligible Individuals

    Any individual(s) with the skills, knowledge, and resources necessary to carry out the proposed research as the PD/PI is invited to work with his/her organization to develop an application for support. Individuals from underrepresented racial and ethnic groups as well as individuals with disabilities are always encouraged to apply for NIH support.

    More than one PD/PI (i.e., multiple PDs/PIs), may be designated on the application for projects that require a team science approach and therefore clearly do not fit the single-PD/PI model.Additional information on the implementation plans and policies and procedures to formally allow more than one PD/PI on individual research projects is available at http://grants.nih.gov/grants/multi_pi. All PDs/PIs must be registered in the NIH electronic Research Administration (eRA) Commons prior to the submission of the application. See http://era.nih.gov/ElectronicReceipt/preparing.htm for instructions.

    The decision of whether to apply for a grant with a single PD/PI or multiple PDs/PIs grant is the responsibility of the investigators and applicant organizations and should be determined by the scientific goals of the project. Applications for grants with multiple PDs/PIs will require additional information, as outlined in the instructions below. When considering the multiple PD/PI option, please be aware that the structure and governance of the PD/PI leadership team as well as the knowledge, skills and experience of the individual PDs/PIs will be factored into the assessment of the overall scientific merit of the application. Multiple PDs/PIs on a project share the authority and responsibility for leading and directing the project, intellectually and logistically.Each PD/PI is responsible and accountable to the grantee organization, or, as appropriate, to a collaborating organization, for the proper conduct of the project or program, including the submission of required reports. For further information on multiple PDs/PIs, please see http://grants.nih.gov/grants/multi_pi.
     
  19. Nielk

    Nielk

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    Hope123,

    I'm sorry if it seemed that I was lashing out at you. I was just talking out of frustration. You are obviously very caring and knowledgeable about the situation. You are right. I don't know the procedures of how one has to apply for a grant for the NIH and for the record, I have nothing against Dr. Friedberg. He heads a fine organization that does do a lot for us. I am just talking from my own frustrated pain and the pain of others that I see around me. It is very hard to swallow everything that's been going on right in front of the government's noses and there doesn't seem to be any action on their part to try to get us out of this mud. How many of us will have to die or commit suicide before they start taking us seriously? I'm not directing this toward you, Hope123, it's a general frustration. I listened to this morning's radio interview of Marly Silverman and she was saying that 6 million dollars have been allocated for cfs funding for 2011. Friedberg's study would take up 10% of that. I'm not saying that there is no merit for a study that he is designing but I would say, in my opinion it's at the bottom of my list.
    There have been so many studies like this done for cancer patients and we can just take those and adapt it to us.
    I don't know if you read "Full Catastrophe Living" by Jon Kabat-Zinn, Phd? He talks about the stress reduction clinic that he ran at the University of Mass medical Center. It talks about how patients with all kind of problems were referred to his clinic;
    from AIDS, heart disease, cancer etc.. They learned mindful living and meditation for stress reduction. The book is an excellent read and patients can gain a lot from it.
    If we are going to spend 10% of the available funds, I would like to see it spent more on science, finding biomarkers and possible treatments.
    Thanks for your reply and all the info.
     
  20. xchocoholic

    xchocoholic Senior Member

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    Dr. Friedberg is the president of the IACFSME. So he should be aware of the physical findings in ME/CFS and yet he's quoted as saying.

    In this section on the IACFSME websites they talk about CBT as a tool for ME/CFS. So, what's he going to do for $600,000 that will be any different ? I'll sign up for maid service ... lol ...

    http://www.iacfsme.org/FactSheetonCBT/tabid/302/Default.aspx
     

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