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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...

It would. Any suggestions on identification? A Guardian ripped to shreds under left arm? Oh no, that should probably be in angry thread. Perhaps just.....?? What do you think? Actually I think I had a photo of me as an avatar for a while. You might recognise me.......and me you. Shall we decide...

Thank you @TiredSam for the alternatives Amazon video lined up but the numbers on iTunes will deplete if we spread our purchases. What to do, what to do?

@MeSci has just posted on another thread that You and Yours has just had a fairly large section on people with ME getting turned down for benefits. Perhaps the various approaches to ME, including Unrest, are together beginning to change the direction of perception of our illness in that we seem...

Sorry @Wonko that " Unrest" didn't do it for you. Haven't seen it yet so no personal comment. Would your sister not see a bit more of your life from it? Not saying she would- just a question. -But my tickets arrived this morning ( Crowborough on Sun 12th Nov) -I will buy a DVD, hopefully to...