1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS
A small study with just nine patients has captured the attention of patients and researchers alike after reporting direct evidence of inflammation in the brain of ME/CFS patients. The finding was one of the highlights picked out by Professor Anthony Komaroff in his IACFS/ME...
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Newbie needing help

Discussion in 'General ME/CFS Discussion' started by Fogbuster, Oct 14, 2013.

  1. SOC

    SOC Moderator and Senior Member

    Gosh, no! We're all suffering together. Now if you start telling people they ought to exercise because it worked to improve your CFS, so it should work for everyone else, you'll start seeing some serious pushback. ;) You seem much too sensible a person to even consider doing such a thing, so you'll feel very welcome here.

    Good luck with that! Try to make sure you get a tilt table test. Some docs like to brush us off once we have a CFS diagnosis of any kind and refuse to do the obvious tests.

    Hopefully some of our UK members will chip in with advice on testing within the NHS. :)
    MeSci, WillowJ and Valentijn like this.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Cornwall, UK
    As I don't have OI I am not the person to ask about diets for it, but I have a friend who says that a palaeo diet is helping her. However, she is on quite a lot of meds too. Her symptoms sound very like yours, and she says that her OI/POTS is much worse than her ME. I'm sure there are people here who will be able to advise, and quite likely already some threads relating to OI and diet.

    I know all too well about sceptical but ignorant parents, and friends, and doctors....etc. That said, pacing is vital (for ME anyway - don't know about OI). It's not a cure but an essential management tool.

    I'm not too bad, thanks. I get worse when I overexert, which is often unavoidable. I've been ill since 1995 and have had worsenings (pretty bad at times) and improvements. A lot of things have improved since the change of diet plus supplements, and if I could only afford to rest more I might make faster progress.
  3. caledonia


    Cincinnati, OH, USA
    Take a look at the 4R Gut Healing Program. The link is in my signature. You have to take herbs or meds to kill off the bad bugs in your gut. Diet alone won't help.

    The wired feeling could be due to GABA/glutamate imbalance. GABA is calming, while glutamate is stimulating. The treatment is to take GABA, theanine or other calming supplements while eliminating glutamate from the diet. Synthetic glutamate (MSG) is in most processed foods. So you need to stop eating processed foods, bottled sauces, spice mixtures, etc. Then there are some foods which are naturally high in glutamates - the four biggies are peas, tomatoes, mushrooms and Parmesan cheese.

    More info here: http://www.dramyyasko.com/resources/autism-pathways-to-recovery/chapter-4/
    The good stuff is about 3/4 of the way down the page.

    Co Q 10 works wonders for me for brain fog. 100mg. If it's going to work for you, you should know within a few days.
  4. Fogbuster

    Fogbuster Senior Member

    Can someone please help me with deciding what to do to get started when you are faced with this illness. For instance, what to test for? eg bartonella. I guess it can come across as lazy as it may look like Im asking for everything to be put on a plate, which is not the case. I understand everyone has to do there own journey and research to help themselves but the mental fatigue I experience on a consistent basis 24/7 makes doing anything incredibly overwhelming and unproductive. I have the great intentions but not the mental capacity to pull it off. Please help!

    Best wishes

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