Hello Everyone....Yes, ME, CFS/FM has been around for centuries. One only has to go back to the epidemic of polio at the Royal Free Hospital in London in the last century to see how one illness can follow another.
A fairly large group of doctors and nurses came down with a mysterious illness after treating polio victims. Over 250 were affected. This was in l955, at that time it was given the name ME. In the late 1970's - 1980's at the time I became ill it was redifined as CFS/Chronic Fatigue Syndrome and FM/Fibromyalgia. We now know that a lot of the doctors and nurses at The Royal Free Hospital recovered, but many did not, treatments were not available and in England, pscyhiatrists were able to lay it at the feet of "mass hysteria." Psychiatrists have been involved since the mid 1900's to explain the psychological "implications."
At the time my illness began, we were treated as AIDS patients...there was a lot of shame and laughter at our expense, 'Time' magazine finished us off with a real hatchet job of an article and you simply didn't tell anyone this additional diagnosis. First off, we didn't know how infectious it was, so why scare people and risk losing their friendship and/or love? So we kept quiet and suffered in silence. I have 3 very serious neurological conditions that were bad enough, and I had some rather barbaric surgeries in order to deal with them. Today there is help...and hope. In my day, the main one was described in medical books (no computers then, remember? No research whatsoever.) Anyway, it was a very short description, one line that said: Quadraplegia followed by death. And, indeed, I knew many people who died just that way. We knew that others had to be afflicted, so worked with finding them info from the NIH (which had nothing at the time of my diagnosis, but I left my name and address. It paid off.) We reached out to others by having our organization's name placed in the packet sent from the NIH and received more phone calls than we ever expected to.
It went from nothing to personal telephone calls, Newsletters and the latest information. Research was hard to come by, but little by little it became The Mouse that Roared. Today it's a national organization with branches in every major city in the world....people can readily find information via the computer. Whereas I used to receive telephone calls day and night from all parts of the world (the founder had since died of the illness), others did much more but I wasn't happy with the amount that ended up for Research. What people don't understand is this: The victims have to put up money often long before the govt. will take notice and also put in $$. AIDS had broken our healthcare system, we overspent on Research and you'd be pretty shocked at how much some groups receive...such as MS and far more than that AIDS and other groups. The VA is a big supporter of my primary disease, but once that's under control, that money will then be diverted to ours since so many soldiers are returning with it. Things change; and knowledge is available.
I joined another group, an offshoot of the original, but all of the money gathered was used for research. A very hard-working family has hired researchers, especially from Australia, and they're making great progress in the very mechanism of the causes and how to "fix" the problem. A lot of people donate, but being poor is a big problem among that group and ours. That's why those of us who can give to help others should. Everyone can afford $5/mo., check about Amazon's donation to charitable group based on how much you spend, and many companies, my daughter's included will double the amount given up to $5,000/yr. I believe. Now I give to other groups also and always will, but you can do your part by checking these sources out. There is/was a time when other companies joined together and tripled the amount given on a certain day once/year. I believe it is/was called Giving Tuesday. We need to actively raise funds ourselves in order to fund more Research.
I've been sick with ME also for the past 35+ yrs. (one forgets dates, etc.). All of my doctors have believed me, and I know that I'm most fortunate. I was diagnosed fairly early and no, it hasn't been easy, but that's the road I'm on. Well, not just me, but my husband and children, also. I read about the Royal Free Hospital and just checked to see the date this occurred. This was during my childhood and I can remember receiving the polio prevention cube b/c my state was one of the first b/c it was discovered at The University of Pittsburgh. So for me, this is simply the past....not history. We could certainly use the money that's brought in by a public outcry for answers to the present caronavirus outbreak, but I thought the same would occur as research from ME, ALS and AIDS filtered down to us. It never did. I'm not saying these groups didn't deserve their money, but when is it time to also include other illnessses. I actually thought I had AIDS myself as I'd had a transfusion during one of my surgeries. Everything was a big unknown for a long time. My husband always believed me, and teens...well teens are teens. One didn't believe me at times, the other always did. We all have a wonderful relationship today and I'll be forever grateful for their support in all necessary ways.
If I may offer some advice it's this: Seek counseling for what's occurring. I was too ill to attend myself, but it would have helped my husband and especially my daughters cope. It was a very scary time...the youngest thought I had cancer. The neurosurgeon was sure I did and it took results over 3 mos. to return. I was too sick to care, I still have never-ending pain, but now the volume is turned down. Not off, but down. So things have improved in my lifetime. The computer advanced us quite rapidly and research is now shared among countries. As a matter of fact, now there's too much and people hang their hopes on a certain announcement. Well, I know better and I firmly believe that when an answer does come, it won't be a cure, b/c the illness is so diverse, but rather a series of meds and natural products that can work in the body. But that's just my opinion. The Lone Ranger here. So yes, if you can find a book, read the history of this throughout the ages. Where do we think the children's story 'The Princess and the Pea' came from? I believe this was an early tale of it, I've never read that anywhere, but read the story and tell me what you think.
Many good wishes as you travel your own personal way with this. Yours, Lenora.
