Sorry no offence -was just making a general remark. I am just really annoyed at this situation.Saying that what someone thinks is naive is disrespectful, IMO. You may disagree with what I say, but that doesn't make it a naive position.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Sorry no offence -was just making a general remark. I am just really annoyed at this situation.Saying that what someone thinks is naive is disrespectful, IMO. You may disagree with what I say, but that doesn't make it a naive position.
Sorry no offence -was just making a general remark. I am just really annoyed at this situation.
If people have signed this Mega Research Project Petition ...unaware of the PACE exponents' involvement ...if they wish to UNSIGN pending further clarification of patient selection criteria, data sharing protocols, and exactly how the PACE experts are involved in the study.....
Go to your confirmation e.mail and press the "didn't sign" text box and that will remove your name.
If you have lost or deleted the original email confirmation, you can also fill in a form on the Change org web page and request to be removed. They will do so and confirm it.
we are working on producing blogs from each member about why they are involved and what their expertise/field can bring to the Alliance and the big data study that we are hoping to establish.
Hi i am Peter White and if my research is rejected patients will suffer.
Hi I am Esther Crawley, children want GET
a large number of positive messages
Just a quick comment. I don't think it's correct to say 1800 patients have signed. For example, at least one of my friends who doesn't have ME but is supportive saw the petition highlighted on Facebook and told me she'd signed. She didn't realise this wasn't a petition I was supporting, and I didn't have the heart to tell her she'd done the wrong thing. I guess there will be lots of others signing who are not ME patients but friends and family trying to be supportive, as well, of course as lots of colleagues, friends etc of the bad guys.
Hmm, I've been expressing my opinion on their recent posts and it looks like all my comments are there, and on the MEGA petition one there are a couple of comments of an hour ago - were your comments on a post of theirs or were they a visitor post?.................and just to register a little niggle.
I posted on AFME's page some of my concerns about MEGA and the petition and .........whoosh!........one minute my comment was there and then it disappeared. It seems one is only permitted to support the research and White's involvement. Not impressed!
.................and just to register a little niggle.
I posted on AFME's page some of my concerns about MEGA and the petition and .........whoosh!........one minute my comment was there and then it disappeared. It seems one is only permitted to support the research and White's involvement. Not impressed!
Hmm, I've been expressing my opinion on their recent posts and it looks like all my comments are there, and on the MEGA petition one there are a couple of comments of an hour ago - were your comments on a post of theirs or were they a visitor post?
I guess you must have been really critical of them then, congrats! Just take it as a badge of honour