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@large donner It might also be worth pointing out that Bristol uni staff i.e. Crawley ( I am presuming that teaching is one of her responsibilities) are presumably teaching students course content that is not supported by the revised scientific evidence available. I can't imagine either that...

Do we have any Bristol alumni here? I read last week that Russell group universities including Bristol are investigating the wealth of their alumni with a view to tapping them for a donation. Follow the money. Surely we/ ME community has an alumnus from Bristol. A complaint from potential...

Hi - thanks for starting this thread @Sallycatherineharris I find it hard to describe how the news affected me. It was surprising and actually shocking. I have not been one to seek the elusive holy grail. For 9 years I did supplements etc with some degree of acceptance of the illness and...

http://cureme.lshtm.ac.uk/the-uk-mecfs-biobank/ Research nurse ( names has disappeared-ugh) recommended following progress on website. There is a place to put your email address on link above for info updates.

Confirmation received this morning from the research nurse that I am not suitable to provide samples for biobank. It was as I expected. I had also asked whether samples could be collected at home because that hadn't been fully stated. They can, funded by the NIH grant. This is great because...

Had a very prompt reply from the research nurse at the biobank requesting information giving criteria I can't comply with. 1) need to be younger than 58 (18-58) 2) must not be on steroids or antivirals ( affecting immune system) 3) address must be given. I might fit there since I am in London 4)...

I think Invest in ME is currently doing a doubling of donations for a short time. @Jo Best

Thanks Andy. Have contacted them.

@Andy Is there an email address for the biobank?

Have answered primary progressive but have been diagnosed with a heart issue needing surgery so this may be making a significant contribution. EDIT: there could be a link between ME and the heart condition via RCCX theory but please don't ask me to explain that. Sharon Meglathery writes about them.

@Graham I meant on the forum because I don't live in Sussex. We came quite a way to see the film. For some reason I wanted to be part of a group at a screening. Thank you for organising the event. Must have taken a lot of energy. We so wished to stay longer for the Q and A- if you have the...

@Graham @MEMarge It was good to meet you this afternoon in Crowborough. I recognised Graham immediately, and MeMarge almost as quickly. I was sorry not to have a chance to speak to you afterwards: would have liked to stay for the Q and A, and tea and cakes, but I was crashed. It was a fair...

Thank you @ChrisH It's been helpful to hear from someone who has gone through the experience. Good wishes.

@NelliePledge Hi Nellie- I think yours is a good question. I am not fully clear on the implications of the various diagnoses. I can tell you that at my first appointment with a cardiologist, I asked him whether I had Pots. He did a stand test for 3 minutes before saying 'no'. It should have...

@ChrisH I understand from your last post that you believe your ME to be linked to radio frequencies around your tall apartment building. I am afraid I am not familiar with this subject at all, apart from knowing that some find sensitivities to mobile phones, microwaves etc. I don't know if we...

Thanks @ChrisH That's a useful summary. It seems unfortunate that having gone through surgery a second time, you cannot reap the full benefits because of the ME. I am not familiar with the drugs you mention but after 6 months on acyclovir, sense there might be some improvement but, as I said...

@ChrisH Thanks for your interesting post. Could I just check that I am interpreting correctly when I conclude that, once your aortic stenosis was corrected at around 70, you had 13 years without heart problems ( but with ME) until your recent surgery. In other words, once the heart problems...

@AndyPandy Unsure if you have tried antivirals, but in the link I posted above, Lerner does claim that antivirals improve both cardiac and CFS symptoms. He also claims that rest is essential. I try to keep my heart rate as low as I can helped by a wheelchair. OI stresses the heart when I am...

@AndyPandy As I understand it, ME brings with it higher risk of hypermobility and heart valve problems. Perhaps pwme should talk to their gp re this. An echo will show up valve problems. I also remember from the past one of the US ME doctors writing about the extreme amount of rest we need...

I understand that pwme are more likely to have hypermobility issues, and that these might be linked to heart valve prolapse- this may just apply to the mitral valve. I'm not sure about that. Dr Bansal diagnosed me with hypermobility in April this year, and I had a mitral valve prolapse...