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Thank you @ragelka for taking the time to post your review. I hope that your experience will help others who might be tempted to try this. Your experience sounds similar in some ways to my experience of the Optimum Health clinic years ago and I'm sorry you went through it too.

The name and tagline of this organisation is hilarious. I wonder if they were going to call themselves 'Evolution' but decided it needed to sound a bit sexier. And how many people are they touching?

Yes often it's impossible to tell if it's the start of a cold or PEM. Like @Kitty said, if it really develops into very chesty cough or very phlegmy runny nose and sore throat it's a bug. If it just stays as sore throat, tight chest and slight cough, it's 'just' ME.

I'm sure it's true that there is a connection between autism and ME: autism does appear, to me, to be slightly over-represented amongst pwME. However, I think ME fatigue and autistic burnout fatigue need to be more closely compared before conclusions are reached as there may be differences. I...

This is really well worded.

I think this is a great approach.

Yes, I was being optimistic but that is definitely a worry. I really hope we can avoid getting too tied up in the mind/body conversation in the press when DecodeME results come out, whatever they may be. We need to focus on what we need moving forwards and how this study could lead into further...

I think the problem is that ME is widely perceived to be neither a physical illness nor a mental illness, but an imaginary or made up illness. It is seen as a set of behaviours rather than a mental/physical illness. It might be compared to a phobia of spiders, which may be deeply rooted and...

I wonder if Ron would have that much influence?

Brilliant, thanks @hotblack and @Andy . Reading that link, I think it was maybe the bit about giving access to NHS records that I didn't give permission to as I wasn't sure how much personal information that would include. I'll definitely message them though just to check I gave permission for...

@Andy I'm not sure if I ticked the box to allow my data to be used by other researchers when I sent off my sample. I think I may not have done as I was a bit unsure what it meant. I would now like to give permission for this if I haven't already. Do you know if it is worth contacting DecodeME or...

Thanks for this link @Andy I hadn't seen these before. I'm encouraged particularly by the Uni of Glasgow project :thumbup:

Thank you, that's good to hear!

I very much agree. I have a lot of respect for Fluge and Mella. Not so much for those selling the drug as a treatment before the research is there for people to be able to make in informed choice. Have I missed something here? If so, can someone point me in the direction of relevant thread? ty

Yes that makes sense and it sounds like a sensible way to increase probability that everyone has the same illness, in the absence of a diagnostic test. I feel that many of us who can't pinpoint an exact start date of our illness with 100% certainty will actually still fit in to that same...

This bit interests me. Does anyone know why they would require this? I wonder what percentage of people are aware of a clear start. For me, I think it's likely there was an infectious start but it was progressive so hard to pinpoint exact start.

I wonder if the death threats were investigated, you'd hope so.

I wonder if this is the study I was going to be a participant in. I fitted most of the criteria when they were recruiting in 2015 but it turned out I wasn't eligible because I take anti-virals (acyclovir) which obviously would skew the results. I find the anti-virals help although I've been on...

I find this, as far as I understand it, very interesting.

This is making me glad to be a member of AfME and not MEA.