So sorry for you and your friend's family @Countrygirl. Make sure you get the rest and support you need at this time.
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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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this is because there is simply no agreed upon treatment. that is why. someone has tried to sue the govt there so he could get valcyte but he lost. i dont know how many studies they want...but its probably more than one and it has to be large scale. i just dont know.Agreed and it definitely needs to be started by someone within the UK but then let us know how those of us not in the UK can help. I feel very strongly about this but lack any real knowledge of how the UK system works (or in this case, doesn't work). I feel one of the biggest difference with the US is that here doctors are very worried about being sued and have very expensive malpractice insurance. So even if they do not give a Sh*t about the patient, they still care about being sued. But it seems in the UK, the doctors are untouchable and the thread of a lawsuit holds no power.
Canada is bad yes...but at least we can get disability without too much of a fight. my GP said i would NEVER Get it...that he knows people with MS who are turned down....but i got it on the first try. at least someone here knows how serious it is. someone in toronto anyway.Sadly, Canada is probably worse. People die here because when they go to the Emergency they are not seen soon enough. A GP told me that care in Quebec is the worst in all of north America. A friends nephew died at 26 from meningitis because they didn't have equipment,and this in downtown Montreal.
we clearly need to organize and do something. there is no other way. people in the UK have to demand changes and be aggressive. I don't know...but something major has to be done here
Is there a thread yet where we can post advocacy type links? I know of a site that has anonymous doctor reviews, and the site does have a UK section.
Very sadly, I have to report the death of a dear friend of mine of nearly 30 years who joined Phoenix Rising at my suggestion after he became very ill following a series of tick bites from an infected area.
we clearly need to organize and do something. there is no other way. people in the UK have to demand changes and be aggressive. I don't know...but something major has to be done here
If people agree, we need a new thread under 'members' only'.