• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. S

    Australian ME/CFS Good Doctor List

    Hi, I am in that group too, Ive also tried emailing the society but not much luck.
  2. S

    Australian ME/CFS Good Doctor List

    Not sure if any of these for SA are practising now? Trying to find a decent GP is like a needle in a haystack
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    Non Hodgkin lymphoma and CFS/ME.

    Thanks for your replies, being how its caused and how ME may come about I can't help but wonder. Also having 2 children they have the potential for having the same exposure as us. Even though he's symptom free I have been saying to him for some time that he is scaring me as sometimes he reminds...
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    New South Australian study starting

    This the study with Kwaitek, Barnden etc? I was in their next study in 2010 we had an MRI, spect, 24 hr blood pressure, ankle bracelet for a week to measure activity and the neuropsych testing. Is that the one they just published?
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    Non Hodgkin lymphoma and CFS/ME.

    Hello, I was diagnosed with CFS/ME almost 10 years ago now and my partner of 14 years has just been diagnosed with a form of NHL called follicular lymphoma, it is rare especially for a 38 year old man. I recall reading from time to time about a link between ME/CFS and NHL and I can't help but...
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    Brisbane/Goldcoast - Looking for patients for upcoming neuroimmunology study

    They just posted for more on facebook, including ME/CFS sufferers that are still able to work part time: Good morning all, we are looking for NEW PARTICIPANTS for our studies! If you or anyone you know would like to be a part of our research, please contact me on...
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    Victoria: “Neuropsychological functioning in Chronic Fatigue Syndrome before & after mentally fati..

    Here's one for you Allyson :) Victoria University Research Study “Neuropsychological functioning in Chronic Fatigue Syndrome before and after mentally fatiguing tasks” It's in an image so I can't cut and paste the details to make it easier to read, details here This must be an ongoing...
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    Brisbane/Goldcoast - Looking for patients for upcoming neuroimmunology study

    Hello Ally, no I haven't posted it anywhere else.
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    Brisbane/Goldcoast - Looking for patients for upcoming neuroimmunology study

    I saw this on facebook the other day and couldn't see it mention here so I thought I would add. National Centre for Neuroimmunology and Emerging Diseases - NCNED, Griffith University. Facebook page
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    Volunteers in Adelaide, South Australia for Carnitine/Fatty Acid study

    Did anyone here back about when the second part begins?
  11. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    I could never test it because I cannot lie down for that long, it hurts my back and hips.
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    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Part 2 is up now, I found it quite interesting that he was discouraging walking bare foot or with flat shoes, or sitting with back straight etc because certain postural positions aggravate.
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    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Sorry I could've sworn I posted it, found it again: manual therapy in CFS, part 1
  14. S

    Australian Specialists including Neurologists

    Have you posted anywhere the supplements he has put you on? I hope things keep improving for you!
  15. S

    Australian Specialists including Neurologists

    Hey Tania, what treatment does he have you on that's helping?
  16. S

    Australian Specialists including Neurologists

    Sorry I was warned about the risks first before agreeing to the spect scan and I don't allow wireless in the house so it is something I am aware of but I figured what hope is there for getting better anyway. At the end of the day, if no-one did these tests they would not know we had reduced...
  17. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Hey I was just reading this article that was posted on facebook which I thought you might be interested in. EDS is mentioned about 2/3 down.
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    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Hey Allyson just to clarify I was replying to this "So you should exercise. But you can't do that-- cause you'll get malaise" My point being, no it's not that you can't do that because you'll get malaise, but rather because it reduces blood flow for us not increase it like intended. Re the...
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    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Well no, for us exercise reduces the blood supply to our brain even more and continues to do so after 24 hours: The Negative Effects of Exercise on a ME/CFS Dysfunctional Brain I should elaborate that this is the distinct difference between a ME/CFS Brain and a healthy or even depressed brain...
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    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Can connective tissue disorders cause blood noses? My son gets blood noses a lot especially when hot. When he was young he also used to dislocate his elbow a lot after his pop gave him a wizzy.
  21. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    I would be interested in your protocol, thanks :)
  22. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    When your blood pools in your abdomen is it a a firm bloat in your upper abdomen? I have had this for a couple of years, I cannot connect it to a particular type of food so I don't think it is food specific though I can bloat after a meal but also before a meal and I noticed my abdomen bloats...
  23. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    I asked him and he sent me a copy of the results of the MRI and SPECT, it wasn't much but better then nothing :) I had my scan done in 2010, it's taking them a while to get enough people it seems! Maybe you should see if you can go in the fatty acid carnitine study here as well? They're doing...
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    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    I don't feel like they give me energy, sometimes my 85% choc and coffee which I have every morning makes me dizzy. After I had my daughter my symptoms had gone for 3 years before they started slowly coming back and I was caffeine free that entire time.
  25. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    My spect scan in the Kwiatek study that's not published yet showed reduced blood flow in the brain.
  26. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Yes, I put it down to having trouble processing all the information that's going on around us, various noises, movements etc
  27. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    No I didn't give up coffee, I did drink 1-2 cups plus decaff but I did give up my1-2 ltr coke (cola) habit. However I did switch fully to decaff during my pregnancy and continued caffeine free until after I relapsed. It wasn't until after trying the supplement regime by Dr Sarah Myhill that I...
  28. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    I have no idea if I have EDS but I can touch my nose with my tongue. I just wanted to add to the hormonal changes etc When I was first really sick with ME/CFS, I think I had it mildly since having glandular fever 20 years ago but I didn't get really sick until bringing it out whilst on a...
  29. S

    Second-guessing the consensus on vitamin D

    Symptomatic, thanks for that I found your experience very interesting. I have had high calcium in previous tests 1 or 2 times in the past, I have tried asking 2 different Drs for a PTH with no success, they did test calcium but it was normal. I did had low Vit D and got it to high normal...