arrow12 Comments
  1. Rich Perillo
    Apr 24 - 4:01 pm

    So, well over twenty million has been spent on CFS research by the NIH in the last six years.
    How much do we know now, that we didn’t, thirty years ago? Anyone? RP

    • Jennie
      Apr 24 - 4:33 pm

      Not sure if you mean that rhetorically, but I think we’ve learned a fair bit just in the last six years. We know XMRV is not associated with ME/CFS. The Lights’ post-exercise gene expression studies and Broderick’s systems modeling results are very compelling. The microbiome work should be interesting. Shungu’s work has treatment implications, and Jason’s study could be a game changer. There’s good work being done, and work funding by non-NIH sources is also teaching us a lot. And Betsy Keller’s study 2 day CPET study published this week was actually supported by an NIH grant, and that paper is excellent.

      Is NIH investing a lot? Not by a long shot. But is good quality science being done with the small amount of money invested? I think yes, in general.

      • Cort Johnson
        Apr 25 - 8:41 am

        Ha! I didn’t know Keller’s research was supported by an NIH grant – that’s cool :) Now that she’s had a successful study hopefully she’ll be able to get another and bigger grant.

      • Rich Perillo
        Apr 25 - 6:11 pm

        My ranting is about the system.
        We vote against our own best interest when we vote for those that game everything and profit from misery and disease. Primarily Big Pharma.
        Most don’t realize that the pharmaceutical companies very much run the entire health care and research systems world wide where profits are the main drivers, and there are no “cures” because that’s not profitable, treating on a regular basis is, if you can get that. RP

        • K. Brown
          Apr 27 - 10:51 am

          I keep hoping for a French Revolution American style. I’ll spare you my feelings about Big Pharma etc.

  2. Greg
    Apr 24 - 6:30 pm

    How much could now be known if funding for the past 30 years correlated with how life altering and devastating this illness is?

    • Cort Johnson
      Apr 25 - 8:23 am

      Things would be a lot different! This is such a key issue for me…It kind of encapsulates everything. You would hope that NIH funding would be based on need, but that clearly isn’t so. In fact as ME/CFS demonstrates need plays very little in the NIH’s decisions where to allocate funding. (1,000,000 people in the US, high rates of disability, huge economic losses – $5 million/year).

      The NIH appears to allocate funding based on a variety of things; researcher interest, inertia, dogma…..what’s hot politically ….and I’m sure other thiings – but definitely not need – that’s way down the list.

      • K. Brown
        Apr 27 - 10:55 am

        I think research dollars are based on the possibility of making huge sums of money for Big Pharma when someone else has done the work of figuring out what’s wrong and then they can develop something that keeps symptoms at bay, not cured – as Rich Perillo says – there’s no money in a cure. Then the meds will cost 1/4 of your annual income til their patent runs out in 16 to 20 yrs. Jaded? Who me?

  3. Marco
    Apr 25 - 8:57 am

    Thanks for this Jennie and Cort.

    It would be an interesting exercise, if possible, to track combined public and private funding over the last few years although whether the NIH would be shamed by the comparison or see it as an opportunity to substitute public for private funding is debatable.

    I’m looking forward to Baraniuk replicating the GWI exercise/brain study on ME/CFS patients given the headlines the GWI study generated (‘GWI is real after all’). It would also be an interesting quid pro quo to see how GWI patients react to the repeat CPET protocol.

    • Cort Johnson
      Apr 26 - 11:01 am

      I think they would be shamed. I wonder in how many other disorders private funding comes close to equaling public funding. It would be interesting to see what that ratio is in other disorders.

  4. Julie Sellers
    Apr 26 - 7:21 pm

    I was diagnosed with CFS at Mayo Clinic Rochester, MN in 2010. I was also found to have Supraventricular Tachycardia, Polyclonal Hypergamma globulinemia and they said I had Myofascial pain syndrome. My biggest complaint is the pain.
    I recently found out to have an autoimmune Atrophic Gastritis. I cannot absorb the nutrients correctly. Therefore my body cannot produce the energy required to function correctly. Symptoms of CFS…falling asleep, fatigue, can hardly lift legs to walk, light sensitivity, Pain, SVT, bleeding problems (anemia), sore throat, night sweats, low grade fevers. My pain now continues to be tremendous-back pain (my back is fine according to MRI). My gall bladder not working correctly but NO stones. I really feel pain is more associated with my pancreas…waiting to see general PC.
    Also wanted to say that I had Low Light Laser treatments done to rid me of allergies. This took me out of worst walking and light sensitivity symptoms. Contact me if you want any further info or if I could be of any assistance.

    • K. Brown
      Apr 27 - 11:00 am

      New research finds that 40% of back pain is caused by bacterial infection, not slipped discs etc. You can find those studies online and see if your doc is willing to try the recommended antibiotics to see if it makes your back well. Be sure to find a bonafide
      medical study to print and take to the doc.

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