Concrete demands for the Open Medicine Foundation

Messages
4,156
Likes
4,799
Location
Vermont, school in Western MA
wow I just figured I wasn't staying on the topic...this is mind blowing to me.

since nobody has ever gathered an iota of data about my illness and symptoms- I find the whole system seems very flawed and close to nonsensical.
I agree. Ive been "lucky" to have a lot of abnormalities in labs and mris and stuff like that--for the most part have enough "clues" and "leads" to lead to a lifetime of exploration. Of course I feel odd using the word "lucky", bc to have severe ME is one of the unluckiest things, and then on top of it, the system of researching this oneself b/c we cant count on researchers or doctors to put the puzzle pieces together, is so precarious and chaotic.

As far as i Know, the only studies planned on cci and me/cfs were the polybio tissue samples taken from ligaments of me/cfs and cci patients having surgery (but this isnt anything related to remission or connecting me/cfs to cci, its more just looking at whats happening to the collagen, and its probably years from completion), the swedish study i mentioned earlier, that was going to study chiari, other craniocervical issues, and cci, but ended up not getting to the upright mri portion to study cci, and published without that, hence not studying cci, and finally, the OMF study that was sort of tangential and simple where they were going to take blood samples of pre and post cci surgery patients and run them through the nanoneedle.


none of these are completed studies on cci. but those were the only planned ones im aware of
 
Messages
4,156
Likes
4,799
Location
Vermont, school in Western MA
I am tired of this game, your narrative is your goal so good luck.
I am being entirely sincere, and I am not enjoying myself, but I do not like being mischaracterized in a way that is dishonest, if not intentionally so. You put words in my mouth, I dont know if it was intentional bad faith argument, and you made claims that you didnt back up with evidence (that these things have already been studied). If it wasnt for that I would have just agreed to disagreed and let go of this awhile back.

I am not trying to play a game. I am genuinely distraught that You are mischaracterizing what I have said. I do understand that it could be from brain fog and not from bad faith, so I want to give you the chance to respond.
 
Messages
9,255
Likes
22,886
agree. Ive been "lucky" to have a lot of abnormalities in labs and mris and stuff like that--for the most part have enough "clues" and "leads" to lead to a lifetime of exploration.
I'm old enough to have been minding my own business when the 20/20 episode came on in the 1990s' about this surgical procedure to do something there where the brain stem is coming out /neck- to widen the ...space there in the bone, I think.

so 30 years ago I think I need this procedure. The constant depreciation in this area. Its enough to raise one's blood pressure.
 
Messages
4,156
Likes
4,799
Location
Vermont, school in Western MA
And here in Feb 2021: we read that denial of claims is the treatment of choice by our government, of our sick veterans.

https://www.wbur.org/hereandnow/2021/02/23/gulf-war-illness

Now its understandable to ignore the chronic illnesses of a bunch of random people with ME. But to treat the US military like this?

Its hard to process. Below from the article above-

"... If Biden demanded a thorough review of veterans and toxic exposure, Binns is sure the administration would discover there are positive changes that could be made to help vets struggling with Gulf War illness."...

"...Binns was optimistic in the beginning. It was just a matter of using research to prove veterans’ illnesses stemmed from toxic exposure in Kuwait, he says, and then once that was finished, he would start work on finding treatments.
“Instead, what we discovered was that the focus of government research efforts was to cover up the problem,” he says..."

"...A congressionally mandated committee that investigated the illness says it was triggered by pesticides and medication that U.S. troops were ordered to take to protect them against nerve gas...".

***
So- I see this as a major route to- further lobby. Jon Stewart is on this topic. Senator Gillibrand. And another senator. The man mentioned above- Binns- he is on this as well.

***
A press release perhaps?- that ties the latest Klimas work on GWS with ME CFS and the possibility of treatment in the face of upcoming new recruits with Long COVID.

sounds like a great story to me. Its being told now more and more (we had a burn pit victim on PBS News Hour last Thursday).
gulf war syndrome is indeed an opportunity i think, as perhaps troops are respected more than the average disabled woman who isnt military.

additionally its very revealing illness as it is almost cecrtainly bc of toxic exposures, and yet, there are too many to pin down any one.

And I say revealing bc its very similar to cfs and post lyme, but unlike cfs, theres much more obvious (at least in the eyes of the people researching it) evidence of toxic exposure. So , it could show a mechanism by which toxic exposure causes illness in both cases.

In this episode: https://soundcloud.com/headlessyouthpodcast%2Ftribulations-25-ft-allegedlyzo we covered US biowarfare, Lyme, and Gulf war syndrome in the context of cfs. pretty decent detail too. my guest knew a lot about US bioweapons programs.
 
Messages
4,156
Likes
4,799
Location
Vermont, school in Western MA
I'm old enough to have been minding my own business when the 20/20 episode came on in the 1990s' about this surgical procedure to do something there where the brain stem is coming out /neck- to widen the ...space there in the bone, I think.
I had heard about how there was interest in this connection in the 90s, although it seems like it still never amounted to formal studies, besides one on fibro (not cfs), and the 2017 peter rowe study on cervical stenosis (not cci exactly, but certainly similar enough to look at the similariteis).

Widening that area sounds more like a surgery for stenosis, than cci, but some people have both. Or it could actually be one of the chiari surgeries, where they take bone out, for the brain to have space. With cci, they put bone slurry and hardware IN but dont take any bone out, nor do they widen the area in any way.
so 30 years ago I think I need this procedure. The constant depreciation in this area. Its enough to raise one's blood pressure.
I hear you. I've only been waiting two years for this surgery, about. but two years too many. --wait its like two and a half. either way--the whole time ive been in a collar. ive eaten a lot of rich food and my belly is bigger but im losing weight, and my neck muscles are so weak typing this, looking at the screen, is killing them. i think im losing many pounds from my neck muscles atrophying. its scary. and i need the surgery but have more research to do before i finalize thing.

and i think all of the stress about this is certainly enough to raise my blood pressure. which is already high bc of cci and pots, but stress from carrying burden of figuring out my disease doesnt help
 
Messages
9,255
Likes
22,886
i think all of the stress about this is certainly enough to raise my blood pressure. which is already high bc of cci and pots, but stress from carrying burden of figuring out my disease doesnt help
My best wishes for you, in pursing these issues.

I should try to find the 20/20 clip again. For me- it feels much of the time squeezed right there. So watchign this procedure: sure made sense. Wonder who was that doctor?

Did you see the procedures that they are doing in a private clinic in Florida with: injections into the neck area?

I think the more we wear collars, it can also further weaken things. But if your unable to sit up currnetly, that may be just the way it is for now.

:thumbsup:
 
Messages
9,255
Likes
22,886
I had heard about how there was interest in this connection in the 90s, although it seems like it still never amounted to formal studies, besides one on fibro (not cfs), and the 2017 peter rowe study on cervical stenosis (not cci exactly, but certainly similar enough to look at the similariteis)
I found an article: the episode aired March 2001. My how time flies!

The doctor was doing the neck procedure for chiari and cervical stenosus, but had not correlated it to chronic fatigue and fibro (mentioned in the article below). So this other doctor got that procedure and his CFS went into remission.

https://abcnews.go.com/2020/story?id=123951&page=1
 
Messages
4,156
Likes
4,799
Location
Vermont, school in Western MA
Transcript of the video that prompted this

Open Letter to the Open Medicine Foundation:

"My name is Walker storz, and um, I'm a severe ME/CFS patient. Um, and I wanted to make this video to the OMF about trying to get across the severity of the situation of the environmental component and why I really feel like we need. Um, despite the great work, you're already doing, you guys to step up and really strongly look into this environmental component.

Uh, and let me try and tell my story, you know, succinctly. Um. I got Lyme while also living in a moldy house, which I didn't know at the time. It was moldy. In 2016 I sort of gradually deteriorated until I ended up being bedridden. In that time, I got the diagnoses of ME/CFS from Susan Levine, um, pots, um, MCA S and eventually.

I started having these new symptoms and I got diagnosed with CCI, which as you guys know, um, means my brain STEM is being compressed because my ligaments, her legs, I have no hereditary connective tissue disorder. I've never had head trauma. And so my strong feeling is that the mold, which I think is short hand for environmental.

You know, bad stuff that we notice we're affected by is what caused this. Um, and I was experiencing episodes of like total paralysis, being unable to speak, um, or move in my house in Vermont. Um, and my sister took me across the country in the back of a van horizontal because of the CCI, because it could not have had handled train travel and did months of just like camping, which is kind of insane to do when you're this severe, but we didn't have the money for an RV or to just indefinitely stay in hotels and Airbnbs.

And the improvements are slow. I don't think it's going to heal my CCI, but at home I was, you know, raising my heart rate to like insane levels, just crawling to the bathroom and back in death Valley. Um, two or three weeks ago, I walked the length of a football field and back without my heart rate.

Breaking 100 and now I'm here and I'm near Taos, New Mexico. Questa and what I just said might sound like, you know, a total success story, but you know, this lifestyle is, it's insane. I don't think we can keep it up. And yet it's one of the only things that has helped us. So that's why we desperately, desperately need researchers to look into the environmental aspect of like the location's effect on our health.

And my story is not uncommon. And the connection to CCI shows that this is not a zero sum thing. This is, um. You know, they might be really deeply intertwined. Um, there's studies that show mycotoxins and mast cell activation can degrade collagen. Um, so I'm just, I'm not sure if we can keep doing this lifestyle, even though it's the only thing that has helped me with our financial resources.

It's, it's totally cold here. Um. We had bad luck in this. Um, Airbnb actually isn't good. It's moldy. Um, and there are just so many things about this lifestyle that are really difficult. I caught some kind of bug. Um, and, uh, that makes things harder. So I've dipped down a little since the improvement I talked about.

Um, so in short, I think that. Unless someone looks into the whatever environmental aspect to this disease there is. Um, and like the epidemiology, including like the cluster outbreaks and how they were geographically contained within certain areas. Until someone does that, I think people are going to die.

They're going to not be able to do this lifestyle. I wouldn't consider myself lucky because we don't have the financial resources for like an RV or something, but I'm still luckier than a lot of people in that I had a caregiver willing to drive me across the country. Um. So please look into this, or people will die.

That's basically my message and that sounds aggressive, but, um, you know, I'm out here shivering and Taos, and I'd rather just, you know. Have a cure for this component of the illness. Um, even though it's beautiful, as you can see, um, this isn't about sight seeing. It's about survival. And, uh, thank you very much."
 
Messages
4,156
Likes
4,799
Location
Vermont, school in Western MA
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
It could be informative. What's interesting is that my original video got a fairly positive response , when posted on jens twitter and also when posted in mold avoidance groups.

Those groups of people often feel alienated from the me/cfs community, and don't post on these forums even though they have me/cfs. So I'd like to think about a way to truly get a representative sample. It would include polling more people than just on pr
I don’t think demands is the right word for a basically hugely praiseworthy , committed group like OMF.
I used to idolize the OMF. But I think it's important to not deify any group and asking them to honor patient input is fine.

In my original video , I was very polite. Since they didn't respond , I became slightly more direct, since the polite approach didn't work. The point is , I don't think we as patients owe them anything. Many of us have donated and those of us who haven't have spread the word to donate to the omf--ive done the latter for years until I became disillusioned. And they are supposed to be researching to help US. So I think it's fair that we ask certain things of them. Demands sounds harsh but that's all it means. It's activist terminology.

Maybe the NIH is a more worthy target , but I think that the OMF is more likely to listen. Hold allies accountable , not only non allies or enemies.
 
Messages
4,156
Likes
4,799
Location
Vermont, school in Western MA
Whereas this particular one: https://soundcloud.com/headlessyouthpodcast%2Fgo-west-young-man Is based on interviewing a college friend who happened to have a more mild version of my fate (we knew each other before either of our illnesses )
He thinks permaculture can help remediate toxins btw. I think that may be overly optimistic but its interesting

This stuff is common