Hello Everyone....I was diagnosed with this illness (and other neurological illnesses), some of which were surgically helped....during the beginning of the AIDS crisis in America. We had no way of contacting each other except by telephone and the occasional newsletter in those very early years. I was just fortunate that I had an explanation for what was happening....and had been happening for many years prior to the diagnosis.
The AIDS crisis demanded immediate attention (and I had no problem with that...people were dying very fast and no one knew the cause). MS was still an illness instead of a disease....I expected info from both of these immune/nerve problems to filter down to us....but it never did.
In the meantime the MRI became available in the U.S. I have been a founding member of a few organizations over the years, both before and after computers. We were placed by the wayside, especially with the term "Yuppie Flu" and an article done by Newsweek or Time (can't remember which). People in Canada were in even worse shape.
B/c we had MRI's available, many Canadians came here and paid for diagnoses....certain doctors and Institutes provided help, but remember that such help may change over the years as doctor retire, etc.
I lived in Canada at one time, Toronto & Saskatchewan to be exact, also know the UK very well and have been involved in the NHS and what it offers (personal experience).
OK....Canada was behind us in the beginning. No question of that. Today, all these years later, I'd say they're on the same footing if not ahead of us with diagnosis and treatment of the illness (which has enough symptoms to keep multiple doctors occupied fulltime). The UK may be facing an improvement now....I do know that it has improved over the years, although you were far more targeted with psychiatric conditions than we were in the U.S. (Although we were hardly taken seriously...trust me.)
When I began, there was nothing for pain....just an old anti-depressant called elavil which worked in some, but did nothing for others. Little by little other drugs have been developed, the internet blew our world into what it is today and information (probably too much) is readily available today.
In spite of my age and multiple illnesses, I do stay well informed with non-stop reading. I recently finished books on Purdue and the fentanyl crisis....I don't have severe cognitive difficulties, although I had some after my heart attack. Point being: Changes are slow to come, they take a lot of money for research, proper diagnosis (I believe that many people are diagnosed with ME and it's something else entirely, with symptoms that may be the same).
It's a long, hard, confusing and painful journey....frustrating, to say the least. The symptoms include so many and often wax and wane over time.
My heart goes out to the family that was mentioned above. The young girl should have been given a feeding tube.....but that's little comfort for her family. Here, lawyers would be hired and the hospital would be held somewhat accountable.
The UK is up against many things at the moment, a shortage of good doctors....it's a wonderful system for births, setting broken bones, even home care....but perhaps it isn't even that good in many rural areas. I know that hospitals are closing, we're having the same problem here and medical care is often lacking in areas without medical centers. COVID has left all nations once again fighting the unknown, and now we have the Ukrainian situation in addition.
I know that researchers here are working much harder on problems of the immune system. Watch out for pesticides, think of places you've lived where problems like mold, mildew and things like asbestos, lead paint and even DDT may have been used. Yes, many cases of this are noticed after viruses, but even one virus alone is not going to be the overall cause.
I do believe that people in the UK will join those in Canada who can provide good support and knowledge of which treatments work best for them. I also know the frustration of waiting for such a system. None of this will happen overnight....and this has been around many times in the past two centuries (think of post-polio even). You're closer today than you think. Money is needed for research....give even one pound/mo. for research, more if you can afford it. Organizations need money, but research is the first stop for all of us. It's way too late for me, I felt needed and wanted, and yes my life had totally changed, as well as that of my family.....but I did something very constructive for all, and I'm so glad I did.
Help those in rural areas....these are the things needed today, research and yes, drugs will come and go and we're going to be the guinea pigs as much as we've always been. It's not easy, but you can do it. Yours, Lenora.
