Open letter to the Open Medicine foundation

Messages
4,161
Likes
4,799
Location
Vermont, school in Western MA
I could use help working on this website. As well as help promoting it ... Also if anyone else has a story of their own they'd like to tell of an environmental component in their illness they could make a video titled "open letter to the open medicine foundation" and then send it to me, I will henceforth put it on my website for all to see. Eventually, maybe, we will be heard and get a response from the open medicine foundation
 

lenora

Senior Member
Messages
3,432
Likes
5,881
Hello @ frozenborderline,

I'm a long term sufferer & volunteer for founding agencies over the years. In my opinion (just that, of course) ME is caused by more than one or even two causes. I do believe progress is being made with one of them, but remember that many researchers across the world are working on this problem. In the beginning we had essentially few to no researchers, so things are progressing albeit it at a slow rate, but this is a very complex problem and with so much more interest by researchers, the answers will be available.

May I ask why you're wearing a neck brace? Do you think you have, or even been diagnosed with anything like CCI? I had surgery for Arnold-Chiari Malformation about 35 years ago. I still have the symptoms of CFS/FM/ME unlike people like Jeff White and Jen Brea (and good for them!!.) who have recovered. If you are having surgery, when is it being done? I'm sure you've carefully checked into the competence of the neurosurgeon.

I think molds, funguses, accidents, congenital abnormalities (me), pesticide poisoning, viruses and who knows what else are all implicated in this illness. There is not going to be just one answer for all...how I wish, but problem solving of a different type. It's very complicated and I so hate seeing young people suffer from it from such early ages. I'm now 74 years old, have had symptoms that were obvious from the age of birth - 18, but didn't have my first surgery until I was about 40.

You're doing your very best and I have admiration for you as you travel this well trodden path. Perhaps you'll be one of the fortunate ones who will have a remission of all symptoms after surgery. Let's hope. Lenora.
 
Messages
4,161
Likes
4,799
Location
Vermont, school in Western MA
ME is caused by more than one or even two causes.
Yes, I know about the complexity, I wrote my theory here https://walkerstorz.com/me-cfs-etiology/. I do think the environment aspect is not given its fair hearing though, compared to other aspects of the disease
May I ask why you're wearing a neck brace? Do you think you have, or even been diagnosed with anything like CCI
I have been diagnosed with cci. I have fairly severe cci. I have needed a collar for years
 
Messages
9,255
Likes
22,887
Extensive Exposure to Pesticides/ Orchards

I was living in rural northern California and living in almond orchards that were both heavily sprayed and smudge pots used when I developed mono nucleosus the first time in 1963 (I was 10 years old) , second time 1965, third time 1968. I lived surrounded by these orchards and frequented orchards through my early 20s- I got Mono round 4 in 1975. I used bicycles for transportation, riding thru the same orchards. My friends houses- also next to orchards.

Most of us drank from wells. Not from centralized, city water sources. Nitrates were known to be high in the area (septic tanks common, polluting water tables).

Dentists were butchers then, mercury in the fillings very high.
 
Messages
9,255
Likes
22,887
I spent a bit of time confirming my issue. So I have a couple of references.

So during the time frame above, they used primary organophosphates and pyrethroids on peach twig borer, the main pest then.

After 1976, a new borer and new chemicals arrived.

The smudge pots usually burned oil. They could put anything oily in there that burned.

Looking back: hard to process it that they got away with this, and likely still do.
 

lenora

Senior Member
Messages
3,432
Likes
5,881
I'm sorry that you have CCI. When are you planning to have surgery? I wouldn't find it sruprising to find that researchers somewhere are involved in the environmental impact of this illness. I hope so, at least.
I spent a bit of time confirming my issue. So I have a couple of references.

So during the time frame above, they used primary organophosphates and pyrethroids on peach twig borer, the main pest then.

After 1976, a new borer and new chemicals arrived.

The smudge pots usually burned oil. They could put anything oily in there that burned.

Looking back: hard to process it that they got away with this, and likely still do.
Organophosates are particularly damaging to the body b/c they're nerve agents. Who would ever think that riding a bike through an orchard, of all places....something that one associates with Mother Nature and wholesomeness.

We worked very hard to get things like Malthion removed form the shelves in TX. I don't know if it was ever successful or not....just pass the chemical section of any hardware store and you can smell them from their bottles alone. Dangerous stuff to be taken seriously. I tell every gardener I ever see to wear protective clothing if they're spraying. We're 100% organic now, Yours, Lenora.
 
Last edited by a moderator: