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    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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  1. fds66

    ME Assoc. June survey - Vit. D testing

    When I asked to have my levels tested a couple of years ago my GP put it on the form along with the other tests I was having at the time but the lab refused to do it because they didn't see on the form any evidence of vit D deficiency symptoms. Recently my GP did another set of tests and she...
  2. fds66

    Measures of outcome for trials and other studies

    I have not been able to read all the replies so forgive me if I just repeat what other people have said. From my own personal experience: I can reduce the intensity of my symptoms by being really careful about pacing myself but that is not really an improvement in the underlying condition. If...
  3. fds66

    Reality - vs - actually having a child if you have ME/CFS - decisions.....

    Sent you a message. Should be in your inbox
  4. fds66

    Simplified Methylation Protocol Revised as of Today

    Thanks Rich. Are you going to post up the new protocol? I can't see it posted on this thread. Is it somewhere else on the board? Of course I may be missing the obvious in which case I apologise. fds
  5. fds66

    Do you have crimson crescents?

    I now have a vision of us all going round with a little torch tucked in our pockets that we will shine in the mouths of every person we meet. Seriously though, I am not going to look in my son's mouth - I too scared to find out if he has them or not.
  6. fds66

    Do you have crimson crescents?

    Oh Gracenote - that me laugh so much - thanks for that.
  7. fds66

    5th Invest in ME/CFS Conference - Programme May 24 2010

    I've been thinking of them all day. I hope they all made it OK and are enjoying their educational day.
  8. fds66

    5th Invest in ME/CFS Conference - Programme May 24 2010

    I hope you all enjoy the conference tomorrow. I have put my name down for a DVD already and I can't wait for it to arrive.
  9. fds66

    Do you have crimson crescents?

    No that no vote wasn't me. I voted yes because I did find them. I didn't vote at all to start with cos I didnt know what I was looking for lol.
  10. fds66

    Do you have crimson crescents?

    OK, I've found them now. I was looking too far back in my throat. Now I see where to look they are really red. I have to admit to falling about laughing at us all examining our throats and even taking photos. I then thought - maybe everyone has them so I got out my torch and had my husband open...
  11. fds66

    The term "Post Exertion Malaise" is also insulting.

    I agree Mithriel - it doesn't matter if the exertion is physical or mental or emotional - it makes me flare up globally. People find it hard to understand that if I walk any distance I just can't think straight. It isn't the experience of most people. In their experience if you walk too far your...
  12. fds66

    Outbreak/Clusters: : ME/CFS & Fibromyalgia Googlemap

    Mark, I don't know how much of the distribution on the ME map is due to where people have computers, join in the internet and speak english?
  13. fds66

    The term "Post Exertion Malaise" is also insulting.

    Perhaps turning it round might give some better acronyms Abnormal response to exertion Delayed recovery from exertion Symptom exacerbation due to exertion Exacerbation due to Exertion Exertion induced Exacerbation Exertion induced Symptom Exacerbation (not sure if they work because recovery...
  14. fds66

    Clarification by Dr Jones of CFSAC comments on XMRV

    Well done Parvo - thanks for that reassurance
  15. fds66

    A Doctor's Wake-Up Call on "Awareness" Day

    Dr Yes, I too was appalled at the way you were treated. Sadlt not entirely surprised because as you say many many doctors feel this way I think. I've certainly had some comments in my time but to be totally at their mercy is a very different prospect. I have the luxury of being able to go home...
  16. fds66

    XMRV+ Positive Survey Launch

    I love the map - it makes it all so exciting.
  17. fds66

    XMRV+ Positive Survey Launch

    Wow, well done everyone. Great thing to happen today.
  18. fds66

    The FINE Trial. BMJ ARTICLE. Nurse led, home based self help treatment for patients in primary care

    Just found this reponse from AFME on their news section of the website (my bold and added some extra spaces) http://www.afme.org.uk/news.asp?newsid=822
  19. fds66

    Sock It To ME

    Tried knitting a tiny sock but even with my smallest needles and wools they are too big so will have to wait to get smaller ones.
  20. fds66

    New Youtube film by the cleveland clinic about XMRV

    Oh yes, I hadn't even noticed it was a British accent. It sounds like the typical documentary introduction voice that we seem to get for loads of programs here.
  21. fds66

    Activity guidlines for ME- The alterative and true version

    Very funny - i have a problem with number 2 - I think I might end up trying to brush my teeth with my sandwich - or something even more disasterous - there is a good reason why I can only do one thing at once lol
  22. fds66

    Phoenix Rising YouTube Video Thread

    Wow - can't believe I've only just found this. Wonderful video and wonderful song. Thank you everyone for all your hard work. It did bring tears to my eyes.
  23. fds66

    My son & i are giving the lightning process a go on this week

    Thanks for the update Coxy. I'm sorry that you and your son are not feeling better. I appreciate your honest feedback on this whole experience. I just wanted to add that I get problems with not being able to sleep, tired but wired feeling and upset stomach when I've overdone things. It's like...
  24. fds66

    Excerpts: Exercise quotes from the Big Talk

    Kim - you are a wonder. Thanks for all your hard work putting all this together.
  25. fds66

    WPI UK XMRV testing/study

    I really can't find the Invest in ME section of the newsletter anywhere so I'm doing to post it here and if it is already somewhere else I'll come in and remove it. I feel that it's an important document and needs to be on here. from...
  26. fds66

    WPI UK XMRV testing/study

    That is my opinion too omerbasket. They said they would test us and I really believe that they will. My thought is that they have a decent number of samples now so they can start their testing procedures and get all the creases ironed out and do some experimentation. When they have the testing...
  27. fds66

    Twitching

    yes - lots of twitches - random places all over my body and it can make my fingers move. Magnesium seems to be helping though.
  28. fds66

    Let's "adopt a sequence" (with funding) of an XMRV isolate!

    I just sent a little money - least I could do for them