Chronic Fatigue Syndrome Group

MendusDotOrg
MendusDotOrg Posts: 3
edited 11:00AM in Introduce Yourself
Hello MFPers,

I’m a neuroscientist in the process of setting up a voluntary online study examining the influence of diet on the symptoms of chronic fatigue syndrome. I’m reaching out to the various diet/nutrition application sites to see if there is interest in such a project. It would be ideal to have a group of individuals diagnosed with CFS, as well as group control group without CFS. That means essentially anyone could participate. The idea is quite simple if you already know how to use a diet tracker. In addition to tracking your diet we would have you fill out a questionnaire (or two) designed to assess your symptoms, or lack of symptoms, and also track the symptoms if possible in your platform. The data would need to be shared with the study organizers in order to calculate both individual and group results. If there is interest I will explain the project in more detail.

Happy tracking,

Replies

  • R_Queenie
    R_Queenie Posts: 1,224 Member
    Not diagnosed, but if symptoms continue this is where doctor is leaning...if I can help let me know.
  • MendusDotOrg
    MendusDotOrg Posts: 3
    Hi Queenie,

    I'm sorry to hear that. CFS, ME, SEID, or whatever you want to call it, can be brutal. I've been fighting fatigue and pain for a long time now. That's the main reason I started Mendus.org which is going to run the study I mentioned above. The idea behind the site is to get as many people as possible together, with the same disorder (not only CFS), and see if we can figure out how to manage our symptoms better, together, and with the help of research scientists like myself. Traditional research takes a long time and rarely involves input from those suffering. I want to change that. People have been doing self-testing forever. Mendus will try to coordinate those individual efforts to maximize the benefit for everyone.

    So maybe your question should be reversed. If we can help let us know?!

    Joshua
  • MendusDotOrg
    MendusDotOrg Posts: 3
    I should have also said, we won't require people to have an official diagnosis to participate in our communities and projects. I plan on providing separate result displays for those with medical versus self diagnoses.
  • CFS000001
    CFS000001 Posts: 1
    It took my a long time to find the group because you cant search groups. So here is the address for people who are interested.
  • cassie858
    cassie858 Posts: 50 Member
    I have M.E / CFS and an open diary, happy to help
  • sonjavon
    sonjavon Posts: 1,019 Member
    I too, have not been officially diagnosed, My doctor is leaning towards CFS and Fibromyalgia. It doesn't seem to be a priority for her to make a diagnosis, but it is for some reason very important to me to have a "name" for what I have going on. I can tell you that after years of not being able to lose weight and every time I have tried to exercise I find myself laid up for weeks... I have decided to try something different. I have cut out all bread, all white potatoes and most rice. I am eating mainly gluten free (I say mainly because sometimes I eat breaded chicken if it is the best option). I can't say I'm strictly low carb - I eat some fruit, I have sugar in my coffee, my salad dressings, and sauces... I've lost 21 pounds in the past month. I also find that the lower carb intake I have, the less gluten I eat - the better my joints feel, the more manageable my fatigue is (not always, but usually), and the better I feel. My exercise consists of my daily living exercises, an occasional set of squats while doing dishes, and stretches and movements while in bed. I may never be thin, I may never be athletic... but I hope to feel better. Each day... better...is my goal.
  • kazad
    kazad Posts: 6 Member
    Hi I've been diagnosed for years with cfs,fibromyalgia and connective tissue disorder happy to help :)
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