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i am so very sorry @Wonko. i hope this changes soon.

:( Sorry about that Wonko. Is there any way you can reconnect with them? I bet it would improve your quality of life (as long as your neighbors upstairs are the quiet type)

This would prompt me into getting tested for small fiber neuropathy which has recently made the news as 40% of a fibromyalgia cohort meet the criteria for small fiber neuropathy.

I agree @Wonko this would be a huge problem. My question to you is how can you climb 3 flights of stairs??? That would be a huge issue for me and force me into being housebound. I am thankful for the elevators in my condo and the perfect parking spot in my suite for my scooter.

I have a mobility scooter, a sturdier one that allows me to go on trails and in nature. While it does not tilt, i can actually recline for an imprumptu ‘lay down’ if i need it. i can also swing my legs over the tiller, which has come handy following my ankle surgery. The scooter is also very...

I would have answered not much pain at all, however, what i notice is that for years now i live on my heating pad. Every day if i get out and about for errands, i will get PEM and pain along my spine which is also sore if I press with the fingers. The heating pad relieves that pain for the most...

Hello @Sing It is also my experience that my OI / POTS started during my gallbladder surgery recovery, some 5 months following my EBV onset disease. After that it really felt like my symptoms kept adding up. OI, depth perception issues (this lasted about 2weeks), sound and light sensitivity...

I believe Ron said from previous communication that he is being very careful about discussing discoveries that may be stunning at the moment but turn out to be untrue after further work. Then when papers are submitted for publication there are restrictions on what you can say asthe journal may...

Sorry i couldn’t resist: what kind of chair, a laz-y-boy, a lawn chair or an electric chair? :laugh::laugh::laugh:

What are his research plans? What should be the research priorities? If he was given 25 millions for research tomorrow how would he spend it? Should there be a medical specialty formally responsible for ME and would this help in expanding research interest?

All the same to me. -Doctor thought it was all in my head, -dr thought i was depressed, -dr thought i was making my symptoms up -dr dismissed my symptoms This all leads to the same thought or behavior, making their opinion that there is nothing serious or important.

I am not sure @Mij why you wish that? Can you please explain? This is the reality of so many patients, a large part of our experiences in health care has been that doctors do not believe us, and doctors do not understand this disease. I think it is important that it is told. Similarily...

Very thankful for @The UK ME/CFS Biobank to engage with the patients and this forums, I have made a donation, and encourage others to make one.

Overtraining and pushing the body to its limits makes athletes prone to viral infections such as EBV. This is prevalent in road cycling. I do not have references to scientific papers, it is simply common knowledge within the cycling community but i am sure other sports would have the same type...