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CFS treatment trial

Posted , 6 users are following.

david59662
david59662

Hey guys,

10 months into my CFS (34 feeling 94) and trying to learn as much as i can in the hope i can recover. I found this extremely interesting trial currently underway in the U.S which is high dose mitochondrial nutrients+ low dose ritalin. Google 'the synergy trial'. I believe you can actually register to participate. Wish they has something like this in the U.K. I'm also curious to know if anyone has mentioned using ritalin or adderal even to allievate their CFS.

Thanks

2 likes, 10 replies

10 Replies

  • david59662
    david59662

    Posted

    From the facebook page it is saying that the low dose Ritalin can potentially 'JUMP START' the mitochondria. I don't know about you but having been an athlete for a number of years that's EXACTLY how my body feels, like it has stalled. I'm going to run this by my GP.
  • david59662
    david59662

    Posted

    There is a video on youtube about it.

    Thre is potential here for this to be groundbreaking, it may not be a cure but it has the potential to restore our ability to at least feel normal and do normal things.

    We all need to keep an eye on this. Youtube- The Synergy Trial for CFS - Pursuing an FDA Approvable Treatment.

  • david59662
    david59662

    Posted

    Synergy trial is actually a more intensive follow up to a positive trial with low dose ritalin. People often state benefits using low dose LDN so this is making more sense, maybe this is it ?

    ''When this combination of treatments (low dose methylphenidate plus the CFS Nutrient Formula) was recently provided to CFS patients as innovative therapy, many patients reported rapid and sustained reductions in fatigue as well as improvement in concentration (brain fog) when measured by the Checklist Individual Strength questionnaire and other patient-reported outcome measurement tools. The Synergy Trial represents the next phase of study for this intervention.The Synergy Trial seeks to confirm these preliminary findings, expand on the observations made in prior research studies, and further explore the safety and efficacy of using low-dose methylphenidate (generic Ritalin®) in CFS patients who are also taking a CFS Nutrient Formula during a 12-week period.  

  • emma83518
    emma83518 david59662

    Posted

    I've just had a look at the website, it sounds quite positive- I hope it works!!!
  • Scoobydoo65
    Scoobydoo65 david59662

    Posted

    Thanks David for posting this :-) I too will be chatting to my GP about Ritalin now xx
  • OliverTatlow
    OliverTatlow david59662

    Posted

    Hi David. Sorry to hear about your ME. I was diagnosed with it for 5 years but just recently had a scan and found out that I have a brain tumor that has likely been the cause of my illness all along.

    This does sound quite positive although from experience I think it's wise to treat such things with a healthy does of skepticism. There have been many trials and new theories regarding ME halied as a major breakthrough that end up coming to nothing. I'm not saying this is definitely a dead end, just not to raise your hopes too high until something more solid is behind it.

    • david59662
      david59662 OliverTatlow

      Posted

      Hi Oliver,

      I read your story last week,cheesygrin i keep a close eye on these forums which have helped me tremedously expand my knowledge about my condition. I had an MRI about one month ago which was normal.

      Yes i won't get my hopes up too much but having been suffereing for about 10 months now it's about time this condition is brought some serious attention.

  • jackie00198
    jackie00198 david59662

    Posted

    I googled "the synergy test," as you suggested. I'm always happy to see CFS research. I'm doubly happy to see pharmaceutical companies looking to bring new products to market for treating CFS. If these companies see CFS as a big enough problem to do clinical studies, that can eventually pave the way for treatments. I haven't been able to tolerate any stimulants, even vitamin b-12 shots. I've found that they make me anxious or initially give me a boost, followed by a crash. So in my case, I'd be very wary about taking any amount of Ritalin. But everyone is different, and I do think the clinical trial is a good thing.
    • david59662
      david59662 jackie00198

      Posted

      Hi Jackie,

      With you all the way. I think there eventually will be an effective treatment for CFS within the next 5 years, i'm saying treatment rather than cure. It's a REAL illness effecting too many people in the years of their life they should be productive for themselves and society yet they cannot be. I'm 34 and am housebound most days. I do always make that extra effort to walk 30mins each day.

      But lord knows if for instance this trial was extremely positive, especially in dealing with fatigue i'm sure just about all CFS sufferers would take it. I was training in naturopathy when my illness struck and i would have no reservations about taking a concotion manufactured by the drug companies if it were to alleviate some of my symptoms substancailly, especially the brain fog and fatigue. Ritalin in low dose should not be a big problem. Really looking forward to the results. I can't see how they would not be groundbreaking with regards to CFS.

      There needs to be more trials like this.

  • scooper
    scooper david59662

    Posted

    not heard anything but go to see my specialist in a couple of weeks smile
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