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Mine fluctuates somewhat, but it is severe - if by severe you mean loud and continuous. It prevents me from hearing the doorbell or conversations and music which are quieter than the noise in my ears. I hear the tinnitus but I rarely focus on it, mostly it’s just there. A bit like people who...

This is the direction chronic pain management is heading. All pain they say is caused by the brain, learned neural pathways. There is dismissal even when a physical cause is found. Herniated discs? Pinched nerves? That can’t be the cause because they’re found incidentally on mri in patients...

Hmm, now that gives MS a dilemma if he’s reading our thread doesn’t it?

Yes I agree. This paper upset me probably more than it should have. I do think it is a useful exercise to compare definitions and see what kind of cohort they lead to, but the conclusions in this paper are misplaced. Until biomedical tests can differentiate subsets patients will be harmed by...

Well done @Webdog your persistence has been rewarded and we all benefit by the chipping away at CBT/GET recommendations.

Severe for me. Multiple high pitched tones in both ears, not the same ones though. Worse with a migraine or a cold. I’ve also had several episodes of a persistent rhythmic low volume clicking sound that I was actually able to record, not sure what that was.

To be consistent in your logic @Action for M.E. your website ought to present the lightning process, homeopathy and a host of other questionable treatments because there are patients who say they helpful

@Squeezy and @Invisible Woman I can relate to both of you with your triggers and experiences of migraine. I’ve had them since a child but much more frequently since ME/CFS. Sometimes I get the pscyhedelic aura beforehand, sometimes I get confusion instead, to the point of having to ask my...

It has been clear for many years that general consumers do not understand the way 23andme has presented its information. So many times I have read others saying “23andme is wrong because it told me I am at risk for xxxx and I don’t have it, or I’m not at risk for xxx and I do have it.” This...

Will I or won’t I? :facepalm::nailbiting: Ugh! I did :wtf::yuck::banghead: Thanks for bringing to our attention Webdog

I was one of the Aussies who had blood tested by Dr Simpson. My results were that 80% of my RBC were deformed. He was recommending Evening Primrose Oil at the time though it didn’t make any difference to me.

Sorry I haven’t been able to read all and keep up so this may have been discussed already From Chris Ponting’s comment: “This reanalysis was required in part because the trial group had revised their analysis from the plan published in their protocol.” From PACE authors’ reply: “They report...

There’s a facebook group dedicated to this issue where patients are compiling their rejection letters

Is there no longer going to be an event in Lismore NSW?

They have not published anything but numerous patients have received rejection letters for: - dsp by Centrelink on the basis of not being fully treated because they haven’t done GET - NDIS on the basis that ME/CFS is not a permanent condition because GET leads to significant recovery.

Also this one: The PACE authors only wrote their paper with the original protocol because they knew once they had to give up the data that it was going to be revealed

Absolutely agree. I don’t believe they’ve changed their position at all, they’re just trying to make it sound more reasonable, and we need to make sure the public know exactly what we’re dealing with.

As awful as the fact sheet is, I detect a change in the way they’ve framed CBT and GET. Perhaps not quite so willing to blantantly display how they’ve been used in ME/CFS, and sounding much more reasonable in order to claim their critics are the unreasonable ones. The CBT and GET described in...

Sorry I don’t understand what you mean by a sympathetic article. Usually that means something is written about ME that shows how life limiting it is or the stigma patients face or lack of research and treatment options.

I’m sorry @Wonko :banghead: