Concrete demands for the Open Medicine Foundation

[frozenborderline]

https://openletteropenmedicinefound...cine-foundation-and-other-me-cfs-researchers/

This website has much info, but this specific part with very specific demands about what kinds of research I would like to see done, I think may be the most important.

It is my hope that it is legible and makes some sort of sense. Im brain fogged and very ill, so its hard to persist in any kind of this work.

 

[Alvin2]

OMF is not going to respond to demands, they have an advisory panel that has probably already made plans and strategic investments.
The NIH is who you need to focus on, they have the purse strings and ability to influence hundreds of thousands of researchers worldwide.

 

[frozenborderline]

The NIH is who you need to focus on, they have the purse strings and ability to influence hundreds of thousands of researchers worldwide.

I feel comfortable with my decision to focus on both.

the NIH does control the purse strings. I have a video aimed at the NIH. I have an idea for a virtual protest that could be effective with the NIH, but as I noted on my webpage, im at my most severe I've ever been now, and I'd need a lot of help with webdesign and even writing copy to execute that. I'd need allies.

In the meantime, I do think that even with the *relatively* meagre funds the OMF has, like I note in the post, they could do a few helpful things. Either way, they are an organization with healthy volunteers for the most part, so it feels insulting to me when they deflect criticism by telling me to protest the NIH. I don't have energy to protest in such a way that would move such a huge and uncaring bureacratic object as the NIH. The OMF is full of people FAR healthier than me, and they could easily protest the NIH too. So, if thats the sole thing preventing them from studying environmental stuff... its in their hands

 

[lenora]

How about accessing Whitney Dafoe's page on Facebook? Or Jeff White's organization....who can rememeber the name? Although you probably already have it considering that you have CCI.

The researchers are only paid for a specific type of research....it's not within their power to change direction. At least that's the way it used to be.

The NIH needs to be sat upon....hard, really hard. And even then it won't listen for the most part. Your best bet may come from other countries who are just setting up research at this point. Australia has been a very helpful partner in the past, a lot of the Scandinavian countries are now trying and, of course, Great Britain. These are the places to look for answers and yes, it requires a tremendous amount of reading.

You may do well to have a close relationship with Hip, Pyrrhus and I'm sure others will give their names. I understand your frustration....I've been with this for many, many years, know how the system works (or worked) but can't help set up a web page or the like. All of us have to pool our skills, we really do. I give you an 'A' and know how frustrating and illogical this may seem to you. I'm sorry. Yours, Lenora.

 

[Alvin2]

I feel comfortable with my decision to focus on both.

the NIH does control the purse strings. I have a video aimed at the NIH. I have an idea for a virtual protest that could be effective with the NIH, but as I noted on my webpage, im at my most severe I've ever been now, and I'd need a lot of help with webdesign and even writing copy to execute that. I'd need allies.

Your comfort level is fine but OMF is not going to acquisece to demands.

In the meantime, I do think that even with the *relatively* meagre funds the OMF has, like I note in the post, they could do a few helpful things. Either way, they are an organization with healthy volunteers for the most part, so it feels insulting to me when they deflect criticism by telling me to protest the NIH. I don't have energy to protest in such a way that would move such a huge and uncaring bureacratic object as the NIH. The OMF is full of people FAR healthier than me, and they could easily protest the NIH too. So, if thats the sole thing preventing them from studying environmental stuff... its in their hands

From what i understand OMF has approached the NIH more than once, they have tried many legitimate avenues to convince them to fund ME/CFS research. They have stonewalled for years becasue they are not interested.
There are funding mechanisms and grant applications and procedures to get funding for studies, you need to go through a bureaucratic nightmare to get money for any legitimate medical research. And congress also influences what money goes where, though NIH has some discretionary money as well iirc.
Congress could decide to give a billion dollars to ME research by passing a bill, then the NIH would be tasked with distributing it. Thats one way past the logjam. Some discretionary money can also be used strategically. They also have a very small ME/CFS budget already that they refuse to give any to OMF, they called them a bunch of names last time.
The NIH is continuing their decades long campaign of lip service and tossing gnawed bones.

 

[lenora]

And I believe that the OMF researcher, Ron Davis (whose son Whitney is severely ill with ME) even knows the Director of the NIH. He still got nowhere. It's very complicated to get funding, it really is. We should have had it years ago, but something else was always more important. A lot of these researchers even donate their time and effort to the OMF because they admire Dr. Davis so. That's very kind of them...and I thank them.

Personally, I think the NIH (and govt.) didn't want to deal with one more immune condition...after all, we were still at the beginning of the AIDS problem, although they're now receive huge amounts of money for research today.

Perhaps the Long Haulers Syndrome will help us, I don't know. We'll have to see how long most stay ill for. If they're at a productive point in their lives, then they (and a lot of us) need & want to return to the workforce. It's not for lack of trying that the NIH hasn't produced the proper funds for research...it has been tried, but for some reason we just can't get it. Too many really ill people, and not enough support from leaders in the community....think of the AIDS group, even though there were terribly ill people, their friends were able to form coalitions and they had huge support. MS was looked at like us for many years by the NIH. But a lot of these people recovered enough in between times to make themselves known.

Plus the way we were introduced to the public never helped (thanks, Time). We were introduced as having "The Yuppie Flu"......I'm still annoyed about that one. Without money for research, it's hampered. That's why I lean on donating as much as you can....and then later in the year ask you relatives to do the same in lieu of gifts. It doesn't matter what amount it is, everything adds up and it's our best chance. We've tried very hard for many years to change things...but it hasn't happened. And there are so many orphan diseases like us anyway. Any and all books and particularly movies are a big help as they bring this to the public's eye. So use your talents in the best of all possible ways. Yours, Lenora

 

[Rufous McKinney]

We were introduced as having "The Yuppie Flu"......I'm still annoyed about that one.

you'd think the government would find Yuppies worthy of being concerned about their health.

And meanwhile, were we Yuppies, Lenora?

 

[wabi-sabi]

Your comfort level is fine but OMF is not going to acquisece to demands.

Yes, exactly. The OMF is already doing everything they can for us and attacking them will waste your energy to no purpose.

I too am getting sicker and feel I am running out of time for a cure. But I certainly don't feel in my brain damaged state that I have any insight into what should be researched or where money should be spent. I know it's harder to battle NIH, since they don't seem to care about us and it feels easier to fight with OMF since they care very much. However, I still think it's more important to focus our advocacy efforts on NIH. They are the ones with the real power and money, as well as the ones that need to start caring about us.

 

[Rufous McKinney]

The other NGO who work very hard for us does the lobbying of NIH and Congress.

https://www.meaction.net/take-action/usa-federa-agencies/

Environmental factors represent an immense number of variables and their potential interactions confound simple research.

that huge judgement against Monsanto- injury to an applicator- many many millions of dollars- seems to have had little or no effect on Monsanto continuing to push glyphosate across the whole planet.

Most of us buy a can of organic food, the can is lined with a cancer-causing plastic.

We hand plastics to our babies- here suck on this.

Meanwhile- how can we explain the U.S. Military? Having caused Gulf War Syndrome in 100's of thousands of our troops- known factors that poisoned them in the early 1990s.

Enter 21st Century Afganistan- they burn the used TVs and plastic bottles in burn pits- we now have more thousands and thousand sickened.

We just do that to people when we ALREADY know what might happen. And who follows such orders?

Its so criminal.

 

[5vforest]

I don’t think there’s anything wrong with making well reasoned critiques of OMF, but I also don’t think that they are likely to be responsive to these demands.

If your goal is to advance research into environmental factors of illness, I would try to connect with researchers who are already studying these things and urge them to take a look at ME/CFS. Maybe there are organizations of scientists who are interested in these topics. I don’t know.

As for advocacy / protest with the NIH, I agree that meaction is the group more suited to organize this. OMF is not an advocacy group as far as I understand.

 

[lenora]

you'd think the government would find Yuppies worthy of being concerned about their health.

And meanwhile, were we Yuppies, Lenora?

Hardly @Rufous McKinney....just hard working people doing our very best, the same as our parents before us. I wonder if young people today are even familiar with the term "Yuppie?"

And yes, the govt. should have been concerned and should be concerned today. We were the taxpayers that kept so many systems going. And most of us never took what wasn't our due. I dealt with too many people who were virtually penniless through no fault of their own. Very sad, indeed. Yours, Lenora.

 

[lenora]

I still don't understand thinking the OMF has healthy volunteers. First of all, do you realize how many different illnesses they're dealing with? Most are orphan diseases to be honest. Check out something as basic as youtube and read different books....and I know reading might be hard, but youtube?

Dr. Davis has VOLUNTEERS who do RESEARCH for people like us. What more can we expect of anyone? I can't and I won't. If you want to put your efforts to good use, go after the NIH, although unless we have a concerted effort, nothing will happen. Well, let's just say that it hasn't for approx. 40 years. Read about the history of MS and perhaps you'll gain an understanding of what those people went through before being taken seriously.

It was deemed a "psychosomatic" illness when even neurologist were saying that something was definitely wrong. There was a faster turn-around time for AIDS, but supplements from other countries were used, and those folks had an enormous volunteer structure.

Your attitude is admirable....but point it in the right direction. Don't drive worthy research volunteers away...please don't that to yourself or us. Yours, Lenora.

 

[Rufous McKinney]

And meanwhile, were we Yuppies, Lenora?

I guess I was a young adult professional but at the time, I was not well paid enough, not wearing a suit, not in a big city, and definately not focused on materialism.

yup·pie
/ˈyəpē/


noun
DEROGATORY•INFORMAL
plural noun: yuppies

1. a young person with a well-paid job and a fashionable lifestyle.
   "stereotypical 1980s yuppies obsessed with material objects and financial success"

 

[Cinders66]

I don’t think demands is the right word for a basically hugely praiseworthy , committed group like OMF. They are very open to many things (more than her in the UK) .
i appreciate you wanting your voice heard. Others suggestions are good , you could also organise a large poll of pa on environmental factors to see how many support this, which would add more weight. I personally wouldn’t. I understand your general frustration

 

[JES]

In my experience doctors aren't much interested in environmental factors. Most people doing research in medicine, especially the ones working for OMF, are biomedical scientists who like to look at cells and work in labs. I think it's an idea definitely worth looking into, but first we need to find influential researchers who are interested in the topic and preferably a team of those.

 

[lenora]

Hello @frozenborderline,

I agree with you that environmental problems can/do come into play with this illness. However, there are so many different levels to it....the viral, mechanical and environmental (and those are only the ones we know about....things change), @JES is correct, it takes specially trained researchers to work on the environmental factor and we have to understand that there is a slot for everything. These people study for years upon years in a particularly narrowed down field. That's what research takes...and it takes years to gain the necessary knowledge.

Look at them as all doctors....most, or all researchers, specialize in one specific area. That's the way they're trained, especially today. It's not easy, if not impossible for them to just "cross-over." Have you tried to see if there are environmental researchers?....basically it's a new field and I suspect that it will be difficult for them to even be believed by many other scientist, let alone organizations that do the funding.

Your idea about the NIH is a good one, and if you need help with a webpage designer, I hope you'll get it from one of the talented people onsite. Have you made any suggestions to people who have already gone into the public eye....Jen Brea & even Jeff White? I applaud your efforts, I really do, but just make sure they're directed in the right channel. We need young, aggressive people and yes, I know that so many of years of your life have been taken from you and you're afraid of an unknowable future. Most people on here are in the same position. I wish you well in your efforts. Yours, Lenora.

 

[frozenborderline]

But I certainly don't feel in my brain damaged state that I have any insight into what should be researched or where money should be spent. I know it's harder to battle NIH, since they don't seem to care about us and it feels easier to fight with OMF since they care very much. However, I still think it's more important to focus our advocacy efforts on NIH. They are the ones with the real power and money, as well as the ones that need to start caring about us.

Of course we have cognitive difficulties but patients , even bedridden ones, have figured out things researchers missed. Jeff wood didn't wait for doctors and researchers to figure out his disease. He led the research and figured out his diagnosis before finding a doctor to treat him for it. There are many patients that have done this. We have cognitive impairments but mostly in my opinion they mean less available cognitive energy or labor hours not that we can't ever think straight or normally. Its different than, say, down syndrome or alzheimers.

 

[frozenborderline]

I don't think I am smarter or more academically qualified than Ron Davis. Thats not the point. Patients sometimes have unique insight into their symptomology and many aspects of their disease. And anyone can learn to do research. Scientists like Ron Davis know much more than me, but its possible to know More than someone and still have a small blind spot that they miss. I think we can all agree on the importance of "citizen science".

 

[lenora]

Frozenbordeline.....Ron Davis does his work for the love of his child. He's way, way past retirement age, and since his child is at least as bad as you are, and perhaps worse, I don't think it's right to pressure him more than necessary. The same goes for his volunteer researchers.

I can see one letter outlining all of the different problems we face and yes, Jeff Wood, figured out that something else was wrong. But you know, many, many people have figured out additional things over the years, including Whitney, Ron's & Janet's son. We're such a myriad of symptoms, we really are. In addition to research, Ron goes home and helps care for his very, very ill son, reads about the latest info (including additional symptoms) and works with other organizations (or Janet does, more likely). Neither one is young and they're doing their very best. That's all we can expect of anyone.

Have you checked to see if other, younger and aggressive researchers are available? I understand the VA is the place that really spends money on research (b/c of the injuries suffered by our soldiers), so that would be a starting point. There are many groups that are dealing with this problem now....check with them and let's see what happens. It's onerous work, I understand that, and you're a very ill young man, but so was Jeff Woods.

Years before there was a Jeff Woods I wondered the same thing....was there a connection? I have Syringomyelia and Arnold-Chiari Malformation myself....which also affects similar areas of the brainstem and brain. We have long wondered, and I have known other people who have brought up different aspects, all worthy. Being an activist is never an easy road, it's tiring, demoralizing and burn-out is common.

One deals with so many people with so many diverse needs. You're what we need in many ways, remember that, but deal with ALL organizations and find out what you can. The Miami Project is another good place....lots of researchers who are working on spinal cord cures & walking for paralyzed people. The Barrow Institute, Johns Hopkins...all of these plus many more. The Mayo Clinic (finally!), the Cleveland Clinic. Be chatty and try to find names for those doing environmental research...you'll strike gold at some point. Surgery isn't the cure-all for some of us....how I wish!! But I suspect in many cases the damage was done long beforehand and our immune systems were definitely worn out.

I'd be the first to admit that things have changed since my day and someone has to have access to all of the really good research institutes. You're a highly intelligent young man, find out where they are and who is in charge. Just my advice to you....you're the one in control of how it's used.

One of our current members even wrote a book about living in an RV (I believe) b/c of environmental problems...I wish I had the title to it, but I'm sure that one of the Moderators here or even Cort Johnson would have it. You'll see that diverse problems have been worried about for a long time.

May I ask once again why you haven't had your CCI surgery yet? You may be relieved of some if not many of your symptoms and I would love to see that happen to you. I'm not against you, but just want you to understand the entire picture of what's going on.

COVID once again sent the medical world in another direction. What is your personal story?....not just a list of symptoms. You're one of us and yes, we do care. Yours, Lenora.

 

[lenora]

Oh, just thought of the name of the book, 'Through the Shadowlands' by Julie Rehmeyer. I believe she also lived in the desert for at least a period of time due to environmental problems.

I have every book ever written having to do with CFS since the Lake Tahoe days. I read them, but since I read at least hundreds of books/year, I can't keep all of them. I try to remember the lessons as take aways. I have kept Osler's Web and many others, perhaps Julie's is among them. Yours, Lenora.