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I feel my Titaanus is in my brain if that is even Posible. With my POTs when I am presyncope I hear more like all my internal things. Is not fun or pretty we are very loud organs inside, I can feel flutter in ears, blood pumping, moving, heartbeats..... and then I have my constant high pitch...

Maybe we need a chronological missing data papers and computers paper publish to bring attention to the tactics of this group. “ Satatistical analysis of things gone wrong, computer missing, data wrong.... for Wesley Et al.

We need a fact sheet sent to media too :)

How can we update this fact sheet and have it signed by the 100 people or maybe as an appendage from the PACE reviewers so maybe our own fact sheet blessed by all the community???? Vs their one not backed up by anything?

ME too IBs w crash

SO everytime is there more money to male boldness than ME. Since they are solved, does that mean we get the money :rofl:

Hmm if you b12 is high and iron low how is your folate?

I think this is miss information too. I don’t know how things got so confusing so bear with me. I ahve low Nk cells ( and so do a lot of the Cfs plp). If you google natural killer cell dysfunction syndrome. This is a recognized medical entity with a ICd code. If you have this, the acepted...

My sister struggles w it, she has blood specialist ( hematologist maybe) and they have her in b12shots and iron. Something to do with her b12 keeps her iron low. She is mostly ok now, but has to be monitor and on b12 shots for live.

Would be interesting to dig who funded this organization. I have the feeling, that like EC was chair of UK and the BPs model was driving the patients organization we will find a similar set up on German. Which would be amazing piece of information if it ever comes down to demonstrate motive and...

Wait which Edwards?

I like she used the word “scandal” they have to keep using this word on all the interviews. To be honest we need a few more things on each interview specially in the lack of support of family members, government and doctors we need some buzz words for them.

My fatigue and energy cap are independent, I feel fatigued as a state, So lets say I sit and feel miserable I want to lay down (not sleepy) but dog tired, I have a few fatigues, the lactic acid one, where there is a lot of pain and achiness, and when I move I feel like burning muscles, and there...

Only in UK: Cheat your way up and save disability money and we will give you a tittle and make you in charge of our Kids!!! This needs its own thread.

That one spells Penis in Spanish! why we do not like that one (my kid thinks is hilarious). Post-exertional crash, describes better for me. I do not have a relapse every time I have PEM. Crash = I go back to base number. Relapse, I go lower and do not gain back to base without therapy...

Can somebody explain to me please what is refractory ME? never heard of the term.

This guy has to be stopped in his track sooner rather than later.

Is hard to read from cel but who are this plp copied ( why the government emails?!) I don’t think even when they do a grant all that involvement is like normal in UK??? 2) can somebody highlight the points pls?

This helps, but I do question the use on the POTs plp. If I go by mine, I would literally do nothing, and also I have a question that no doctor has been able to answer, Once I am on beta blockers, how do I know what my new AT is??? Do I use the old one? or do I have a new one???? How do I pace...

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