Funding for ME/CFS, MS, Gulf War Syndrome Research

[lenora]

THE FIRST THREE POSTS IN THIS THREAD WERE MOVED HERE FROM THIS THREAD: Fauci likens “Long-haul” Covid-19 patients to ME/CFS patients

Hello All.....

Is there someone who can read the charts, have access to them first of all, and let us know exactly how much is spent for research/patient every year? We need info like this if we are to continue moving forward. I've read at least 3 books which say that we're among the sickest most doctors have ever treated. It's there...in black/white and yet there's very little to no help for us. What if a 1/4 of all MS dollars are moved over to us for say, 5 years? Right now MS has a good foothold in the fight against their disease. Right now they need to work on bringing down the cost of the drug and making it available to all, apart from that, a good reason has been found...research has paid off.

May I impose on someone who enjoys such travels? Not just for me, of course, but for the entire community. I think you'll be pretty shocked when you read the amount raised. I was and I'm all for them receiving the help they need. Cancer research is in the same league, but no one's going to touch that, so case closed.

Anyone??? You'll be a hero/heroine for today at least. Thanks so much....Yours Lenora.

 

[Rufous McKinney]

What if a 1/4 of all MS dollars are moved over to us for say, 5 years?

I have been periodically trying to find more specifics on: the big Gulf War research funding we have right now.

Its a huge chunk of change- who is applying to do studies? What types of proposals are being submittied.

Well, if I was reporter for a major newspaper, I'd be reporting I cannot figure this out.

 

[lenora]

I have been periodically trying to find more specifics on: the big Gulf War research funding we have right now.

Its a huge chunk of change- who is applying to do studies? What types of proposals are being submittied.

Well, if I was reporter for a major newspaper, I'd be reporting I cannot figure this out.

OK....some of that I know about. You're right...a lot of Gulf War Soldiers are coming home with injuries exactly like my first neurological illness, Syringomyelia. Back then, nothing could be done for us and we died. Little by little we learned and funding, via our own money, was raised for research. Anyway, a friend of mine who was in Vietnam was very plugged into the Veterans' System. He said it beat anyone else, hands down as far as research dollars going into the causes of SM. Now the symptoms of SM and ME are very much the same...very much. Along with SM can come something called ARnold-Chiari Malformation. If one has this it means that it was a congenital condition...you were born with it.

SM can be obtained in car crashes, accidents on the sports field and so many other ways, ACM you're born with. However the way of correcting both seems to be through the brainstem, and sometime shunts are inserted in the spinal cord. I had one of the earlier versions of them, it plugged within 3 mos. and had a terrible build-up of scar tissue. Apart from that I was left in far more pain than ever before BUT if I hadn't had the surgery, the brainstem, which controls all the important, automatic parts of the body, would have failed. Well, it failed as it was, especially with the bad shunt surgery. Shunts are difficult at the best of times. So, we'll wait and see what the Veterans' comes up with in the meantime. If I still had contact with my friend, I'd know...but I don't. I've been trying to locate him for ages b/c we uesd to work together very well. Anyway, during my "off" period, I dumped all the e-mail addresses, etc., of anyone who anything to do with certain groups that I was in. I'd simply burned out...it's hard work day after day and there was never any happy news...that was the worst of it. But yes, a lot of money is being poured into this research by the govt. and I have a feeling a lot of those soldiers will have ME and it will continue to be put into that. The only hopeful govt funding that I see in the forthcoming future. First they'll take care of SM and ACM, then funding will follow for ME. I had forgotten about that. Thanks for reminding me, Rufous. Yours Lenora.

 

[Mary]

Is there someone who can read the charts, have access to them first of all, and let us know exactly how much is spent for research/patient every year?

@lenora - this might be what you're looking for: https://report.nih.gov/categorical_spending.aspx

As you can see, ME/CFS (listed under "Chronic fatigue syndrome") is to receive a whopping $16 million in NIH funding for 2020 - or, about $6.40 per patient. MS is to receive $118 million, or about $118 per patient - 18 times the funding per ME/CFS patient.

AIDS research is in the thousands of dollars per patient, per year.

 

[Mary]

I have been periodically trying to find more specifics on: the big Gulf War research funding we have right now.

Its a huge chunk of change- who is applying to do studies? What types of proposals are being submittied.

Well, if I was reporter for a major newspaper, I'd be reporting I cannot figure this out.

Is this what you're looking for? https://cdmrp.army.mil/gwirp/default

 

[lenora]

Thanks, @Mary, that's exactly the type of thing I was looking for. You'll notice the tremendous difference in research for MS patients. In the beginning I didn't mind it all, as I figured it would filter down to us. When it became apparent that it wasn't, I started asking questions. Now no one's denying that MS is a terrible disease, but very, very few have recurring episodes. In other words, a tremendous amount of money is used for research into a disease that a.) is now accepted as a disease...I can remember when it didn't even exist (it was in the minds of those who incurred it! Sound familiar?) I have know people with unremitting MS, but in the grand total, they're very, very few and far between.

Cancer's a god even though the War on Cancer began with Richard M. Nixon's Presidency. So no use in trying to touch that. If not heart disease (which I have) that's the biggie that will most likely take most of us out.

I just thought if we got some of the MS Funding for a short period of time, say 5 years, then maybe we could make some headway. It's up to you....I certainly can't do anything by myself, apart from donating money, but then it's spread around to so many causes. Think about it, please. Yours, Lenora.

 

[lenora]

Hello Everyone....
Just recently, someone made a comment about what it must have been like in the '70's when there were no crutches, when we were faced with disbelief and they were glad they were living with the illness today. Well, I'll tell you what it was like: It was horrible. We were made to feel like the second wave of AIDS victims, except no one could figure out how it was transmitted. You told no one what was happening partly b/c you didn't know yourself, you often felt that death was imminent, there were NO support systems for not just this but for many orphan illnesses, it was a very sad and lonely time yet somehow we had the gumption to actively do something about what was occurring.

Does anyone point a finger at people with ME or cancer who are going through hard times coming to terms with their illness? Absolutely not....well, then why should we be any different? Maybe we did return to work to early after having had a particularly virulent virus, one that takes mos. to recover from, maybe we should have rested more, drank less and partied less, yes let's ask these questions and get them out into the open. It still doesn't mean that we brought this on ourselves, that it's our fault. It's probably a virus and a whole lot of other things all combined....the perfect coming together of problems that have beset us, but I don't believe for one second that we deserve this, that it isn't real. This is an illness of some sort and we need help, lots of help, including a whole lot more money for research to find out why it happened and is still happening.

Somehow I feel that all I'm going to receive back is an echo....a faraway sound that is just the voices of very, very few of us. Where are you, some of you experts in your field? What has your attention at this particular moment....do something for yourself, everyone you meet in different chat rooms, and other places along the way, but most of all do something for your future and that of the many who will be diagnosed in the upcoming years. Please....just do something!! Thank you. Yours Lenora.