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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. OverTheHills

    Article Invest in ME Conference 12: First Class in Every Way

    OverTheHills submitted a new blog post: Invest in ME Conference 12: First Class in Every Way OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference...
  2. OverTheHills

    positive ANA

    Hi @daisybell /@Gingergrrl It was the quote above that made me wonder; although I have been tested for the antibodies he mentioned and my ANA is homogeneous not speckled. I have been inclined to save my money up till now (hopefully for a treatment like Rituximab, if not, for a pension). There...
  3. OverTheHills

    positive ANA

    Should I try to see a rheumatologist privately about my ANA? (before I see what the Rituximab Phase 3 results come in with) I have homogeneous 1:160 ANA currently, and it has been up as high as 1:320 a couple of times and this does correlate with feeling particularly crap. My GP has tried to...
  4. OverTheHills

    The 12th Invest in ME Conference, Part 1

    OverTheHills submitted a new blog post: The 12th Invest in ME Conference, Part 1 OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London. The 12th Invest in ME International ME Conference (IIMEC12) was...
  5. OverTheHills

    Invest in ME Conference June 2nd 2017

    Hi hixxy The first part of the conference report should be published some time this week. I'm afraid I caught the flu just after the conference and that has s. l. o.. w . . e . .d things down. Oth
  6. OverTheHills

    Invest in ME Conference June 2nd 2017

    Yes MeMum and I are. Started on my notes yesterday but of course I was still pretty foggy from the exertion of a whole day of concentration, excitement and socializing. Luckily I am a May/June magic person (see that thread) otherwise I wouldn't have lasted to lunchtime.
  7. OverTheHills

    Invest in ME Conference June 2nd 2017

    Ditto thoughts from me about no new discoveries announced. Perhaps with the Colloqium so well established now pre publication stuff gets discussed there instead. Still a great day. Top marks to Ryan for being so clear and articulate today, I am still Dazed and Confused and have had to write...
  8. OverTheHills

    Invest in ME Conference June 2nd 2017

    Mending his roof apparently. The conference was a really great experience. MeMum and I took lots of notes and we' ll turn these into an article or two soon. But of course I'm completely and utterly brain fried now.Time for rest and sleep.
  9. OverTheHills

    David Tuller needs our help

    Done. From the total so far the appeal looks to have started well.
  10. OverTheHills

    May/June magic... how does it work?

    Same here although as time has gone on I have had other comorbidities muddle things slightly. One bonus is it makes it even harder for the docs to argue psychiatric or false illness beliefs. Me too I think it would be worth their while to test us in May and December and see what changes with...
  11. OverTheHills

    May/June magic... how does it work?

    I improve markedly every year in Spring. In the UK and in NZ, if I can afford (energy and £) both in one year. It's not heat because it stops late June (Northern Hemisphere) and I go back to baseline, and it makes no difference if we have a hot spring, cool summer etc. I can and do go from...
  12. OverTheHills

    12th Invest in ME International ME Conference 2017 registration is open

    Me. All the way from NZ. How will I recognise the other PR people ???
  13. OverTheHills

    6th April | Dr Charles Lapp talk | Auckland, New Zealand

    The podcast of Dr Lapp's segment is available now. Look on the right hand side of this page: http://www.radionz.co.nz/national/programmes/ninetonoon. I think you can download from anywhere in the world. My view is that this is very good for us although not perfect. I am not a neutral...
  14. OverTheHills

    Picariello, Chalder et al: "It feels sometimes like my house has burnt down,[...]"

    Quite likely , I do get them confused foggy brain. Ignore me, thankyou Invisible Woman glad someone is sharp.
  15. OverTheHills

    Picariello, Chalder et al: "It feels sometimes like my house has burnt down,[...]"

    I notice this is another adult study Trudy C has her name on. does anyone else get the feeling she is trying to build "credibilty" :aghhh::vomit::depressed::nervous::bang-head: In another area. Not content with torturing children, eyeing space left by Peter White departure etc.?
  16. OverTheHills

    My meeting with The Minister for Health, Simon Harris, TD

    @BurnA Great work. Any update yet?
  17. OverTheHills

    Queensland Government: Gold Coast researchers make chronic fatigue breakthrough

    warning - no science background and brain function of a caterpillar :sluggish:- this may be a very very stupid question. @A.B. mentioned mefanemic acid's effect on TPRM-3 mediated calcium uptake. I used to take loads of this as it was an effective painkiller for my severe endometriosis pain...
  18. OverTheHills

    Rituximab and Graves/Thyroid eye disease

    My ANA's not as high as yours Daisybell but similarly, theWellington public health rheumatologists are far too important to give an appointment to the likes of me.Sigh.
  19. OverTheHills

    Rituximab and Graves/Thyroid eye disease

    I asked Dr Vallings about good NZ rheumatologists this week (particularly Wellington ones). I didn't get the impression she is doing any pre/pro Rituximab work with specialists .
  20. OverTheHills

    Rituximab and Graves/Thyroid eye disease

    @Hutan @daisybell I have Raynauds and a past episode of hyperthyroidism, high ANA . Keep me posted if you're up to anything - I'm planning to wait a year or two for Ritux ($$) but I'd like to get on a good rheumatologists list sooner rather than later. Good luck
  21. OverTheHills

    The sexist reality of being a woman with ME

    While we're being nice, can I just publicly compliment TiredSam on his unfailing devotion to sarcasm and satire, on many threads of this forum. Way to go Sam, your posts are a beacon of amusement for this sarky Brit unfortunately hobbled by brainfog. OTH
  22. OverTheHills

    Realistic expectation of time frame before treatment that improves function.

    As a coming up to 12 year sufferer I find it helpful to have expectations, plans, timescales etc, even if they have to be revised. This no doubt is because I used to be a project manager. To not have a plan makes me feel unprepared, even vulnerable. I also buy a lottery ticket sometimes. I...
  23. OverTheHills

    UN Report into UK Govt maltreatment of disabled people PETITION

    British citizens and UK residents. Signed.
  24. OverTheHills

    Doctor-recommended cure for ME

    OK I will give it a go unless anyone with a higher profile (whose threads do not die a horrid death:( neglected in a corner:cautious:) wants to instead. I'll solicit categories and sponsors for other awards, using this one as an example. I think a funniest ppost of the year is another good...
  25. OverTheHills

    Doctor-recommended cure for ME

    Should I start a thread? - PR is usually quiet at Xmas time It will give us saddos something to do. My threads usually die a horrible death:(
  26. OverTheHills

    Doctor-recommended cure for ME

    Lets have an annual award for the stupidest ME recommendation by a doctor. I will give £5 to Invest in ME as the prize for the 2016 winner. I think Countrygirl's given us a strong contender here. PS I realise this is utterly tragic. But black humour is my best way of dealing with horrific things.
  27. OverTheHills

    Putting the record straight - info using 'chronic fatigue' as ME/CFS

    @worldbackwards I laughed my head off. Are you sure you aren't Armando Ianucci or Chris Morris? Joking aside, well done to @slysaint, that sort of awareness raising is very important. Every little helps.
  28. OverTheHills

    Good POTS Specialist in NZ or Australia? (suggestions please)

    Thanks Tania that sounds like a great suggestion, really helpful. I will look up his POTS approach online/try a phone call. I am sorry that your situation is so dire and makes it so difficult for you to get the help you need, cross my fingers that things improve a bit for you. OTH
  29. OverTheHills

    Good POTS Specialist in NZ or Australia? (suggestions please)

    Hello All I think I need to see a specialist about managing my POTS (confirmed by tilt table test 3 or 4 years ago). I have been taking 20mg propanololx2 a day for a number of years which certainly increases my ability to be upright during the day. I eat some extra salt and drink plenty of...
  30. OverTheHills

    Guardian Article: Lack of funding for migraine research (identical to ME situation)

    What led me to draw attention to this article is the great similarity to our situation - ignored because of doctor's psychosomatic attribution , hard to measure, womens disease, fluctuating, not fatal. Migraine history demonstrates the same systemic problems we suffer with, but it seems no...