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I get a croaky, weak voice a lot and have done since I first got ill. I find it very frustrating and I'm so jealous of people who have a lovely smooth effortless voice that doesn't tire when talking! I never would have thought twice about my voice before ME. I don't remember it ever feeling...

What country are you in if you don't mind you asking?

I'm not up to date with the research. I'm going to have to look into why there are no plans for a phase 3 study. But yes, I would definitely want that before I tried a treatment as strong as this.

It's great that you are feeling better! I am interested to hear your story as I am very interested in the Norwegian research. However, I think you're right to be concerned about people wanting to copy you and trying to get hold of the drug themselves. I would be worried that if there became a...

Also, I just wanted to add, learning to pace yourself can make a huge difference and it is possible to live a good life with this illness, however bleak it might feel right now!

Hi @New POD and welcome. I've been in the position you are in now of desperately looking a 'fix'. I've tried a fair few things and my conclusion is that anything that promises a cure is dodgy. There is no magic solution however much money you spend. It is possible to manage some symptoms like...

Important subject area but I agree that the word 'trauma' becomes meaningless if used in so many disparate contexts. I've experienced pretty severe shock trauma (nothing to do with ME) and I've experienced frustration and disbelief about the way the system has treated me with ME. I think they...

Yep, that's one of the things that makes it feel scary and dystopian.

So first I need a drug to cure ME then a drug that can make me live another 20 years so I can make up for the years lost to this illness. Imagine! ;) Something a bit scary in a sci-fi kind of way about the potential implications of a life extending drug though.

Aside from PEM, my bad days are often down to my hormones. Monthly cycle has a huge impact. Took me a long time to realise as the symptoms are just a ramping up of all usual ME symptoms and it happens about week 3-ish of cycle so I didn't make the connection for ages, it just felt random and I...

I think it can. It depends on the patient and the treatment. (Based on my observing a relative go through it. But then she is a relative of me who has ME so maybe that's not a fair test.)

It's a bit like saying we're looking for a person with celiac disease to come on our programme about eating bread. There'll always be someone who says oh I can do a little bit and I'm ok. But if it's against the NICE guidelines it shouldn't be done. I think the person who wrote the letter is...

My worry is that they will find someone who says they have ME and can still go for a short run and that will be incredibly dangerous as viewers with ME might then think they should be doing the same and make themselves worse. They need to understand that they could do real harm with this.

I'm not sure how many people in that age range there are on this forum though? I got the impression we're mostly older! @Ellen thank you for sharing. I imagine that there will be many young people wME out there who would appreciate the opportunity to have their voice heard and to feel that...

I've just had an email from The Chrysalis Effect (even though I've asked to be removed from their mailing list). It says, The word Recovery is just a word, yet it is highly contentious when it comes to chronic exhaustive illnesses like M.E, CFS and Fibromyalgia. Some people believe it is...

I thought the program was good. Phil Parker came across as a paranoid conspiracy theorist (or at least trying to appeal to that demographic) with his 'anti-recovery activists' line. I'm very grateful to Oonagh for speaking out. I wondered if the program could have drawn attention to the way...

I can't remember if I gave permission to share with other researchers. I hope I did. This sounds like an interesting line of enquiry.

@Simon M thank you so much for explaining this so clearly. It's exciting that this study is going ahead, the results will be useful whether the finding are replicated or not. They seem to be moving quickly too!

I use Vicks First Defence Nasal spray but it doesn't appear to have Carrageenan in it. Perhaps I should switch to the Boots one. I tend to use it before I see people or go out (rare!) rather than on first sign of illness. Seems worth doing if it might make a difference.

I find the Better You vitamin D spray is good in case that's what you're looking for. No way of measuring that but seems to help. Other than that, I don't take anything. I know from past experience that it's quite difficult to work out what brands are good because the big brands will spend a...