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There has been correspondence on the MEA fb page today requesting the MEA to write to the Times about the inaccuracies about patients in Fiona Watt’s statement CS has recently posted the following. “A letter has been sent by The MEA to The Times this afternoon. I will not disclose the...

If I get to the stage of researching this, I’ll come back to you @Alvin

Thank you for feeding back this information. It helps put a context to the situation we are facing in gaining MP support which we need if we get a main chamber debate. There are obviously conventions in place which make it difficult for some MPs to sign. It is not just that we are not working to...

I have received replies from both Ed Davey and Nicky Morgan, MPs. Since we hope to have a debate in the full house, and will need as much MP support as possible, I think it is worth making every effort with MPs. David said that he had contacted them a second time but didn't gain any new ones...

https://www.meassociation.org.uk/2018/08/the-times-call-for-review-of-flawed-me-research-in-lancet-letter-21-august-2018/ I have written a note of thanks to Nicky Morgan, MP, linking it to the MEA report which includes the names of the 10 MPs, and a link to virology blog where the rest of the...

Just to add that my MP is one of the 10 signatories. I have sent him an email with a link to the Times article. Anyone else with a connection to the other 9 who is willing to do this? I can write to Nicky Morgan if we don't have one of her constituents here. ED: one word altered.

Thank you @MEMarge, and for your tips @Milo .

@AndyPandy Thanks for the detail in your reply. Will locate the site tomorrow. I have concluded after the last few weeks' experience that plane travel is now easier for me too. I have been diagnosed for 10 years, but only had problems in the car for 1-2 years. I think it is stimulation all...

I think Vince Cable signed one of the petitions, maybe an edm. Maybe he might be interested? In fact maybe all the edm signatories should be approached. I think there were over 100 signatories to the most recent one.

Is there a problem with this link? Have tried to repost twice on local group.

I posted in the last thread @Mattie travelling by car. Now I need to ask about air travel and carrying wheelchairs. About 4 weeks ago, I did the 7 hour car journey I mentioned and it did not go well. We decided to stop halfway and booked a decent hotel. I also decided to stay in bed at home...

Me too.

I was encouraged by the OMF report on Wed on blood issues with a manuscript submitted for publication, and the potential as a biomarker. https://www.omf.ngo/2018/08/15/mohsen-nemat-gorgani/ There was also the dysautomnia conference...

https://www.omf.ngo/2018/08/15/mohsen-nemat-gorgani/ Current research in the rheological properties of red blood cells at the Open Medicine Foundation. ETA: it is hoped that this work may contribute to a biomarker being identified

@ukxmrv Thank you for the comment and the link. Very interesting. As far as I know the work on blood done in the 1990s by dr Leslie Simpson wasn't pursued, but recently Dr Davis has been working with someone from San Jose University on the sticky blood issue. Waiting with interest to see what...

Thank you @Jonathan Edwards. I shall have a think about whether to ask for a referral to a rheumatologist after doing some more reading. I can't help but be curious about blood viscosity and ME. Poor blood flow would explain so many of my symptoms. Once again we just don't know enough although...

I'm sorry @Inara, I don't know. I have been following with some curiosity any comments about " sticky blood" and was interested to see Cort's posting today. I shall have a think about whether it's appropriate to seek more advice. I do have an appointment with Dr Bansal who might advise whether...

https://www.healthrising.org/blog/2018/08/15/sticky-blood-antiphospholipid-syndrome-pots-chronic-fatigue-syndrome-and-fibromyalgia/ I posted about 2 months ago that heparin ( which I take when flying) seemed to improve my ME. I have sticky blood from factor V Leiden. Cort has posted today on...

When I was in NYC in June, I read an article in a journal about something called something like " delayed sleep phase disorder" : it may not have been that exactly. Something similar. Odd thing is that I slept very well for me for the 5 nights I was there, going to bed at 10 and falling asleep...

I was diagnosed with dry eyes in about 1977 at Surbiton eye hospital. I don't know the name of the test that was used but it seemed as though they were putting litmus paper in my eyes and seeing how far the paper became moist. At the same appointment I was asked if I had arthritis ( I didn't...