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@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...

In the earlier days of my illness, I followed the energy envelope theory with some success. I even went to the gym and, if I had enough energy, would do a very little exercise. If not, I had coffee and went home. I never pushed myself to do any gym work. After a while I even improved. Don't tell...

I have some data from my Fitbit hrm which describes my last week of trying to avoid pem as much as possible. It's not been a usual week because I've come away on holiday. We arrived on Fri afternoon and I have just dressed for the first time ( Mon pm) which was not advisable since it's crashed...

@Snowdrop " I think ME will be off the table" I'm inclining to agree. I cannot see how the dep Chief Exec of Nice can be involved otherwise. If ME was a major part of the discussion, how could she present the closing remarks?

What is the dep chief executive of Nice doing there giving the closing remarks especially when ME is in the process of being reviewed by Nice? ETA:https://en.m.wikipedia.org/wiki/Gillian_Leng

@Esther12 I agree with you that it's hard to follow the argument carefully when we don't have one side of the correspondence e.g.what did Lord O'Shaughnessy set out in his letter as his Dept's stance? Am unsure on your point about whether Prof Hooper is assuming that to support Pace is to...

O'Shaughnessy's letter wasn't submitted. Perhaps there is a code which advises that letters written to someone else not be reproduced without the writer's approval. The tone was strong but the argument made that the DOH had recognised ME as a neurological illness for many years, several examples...

I contracted an unpleasant disease in Sri Lanka where I was on holiday in about 2004, d and v etc, 4 years before I was diagnosed with ME. We had been very very careful, no salads, ice, sealed bottles etc. Husband recovered and I didn't. Was not feeling dreadful but still had the runs so went...