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We Are Death, Warmed Up - Blog by Paul Tomkins

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Paul Tomkins is a writer and published author.
He has ME, and he's written an excellent blog, describing his experience of living with ME...

We Are Death, Warmed Up
November 16, 2014
www.paultomkins.com/living-with-m-e/we-are-death-warmed-up/

The blog starts:
"It is torture, of a kind. The unrelenting jab of needles into the spine. The vice clamped to the temples and tightened. The syringes slowly draining blood from the thighs, injecting concrete into the calves. Poison swelling in the stomach, pumping to the veins, tying knots in the guts.

"You shake, but not in terror. Even the twilight is too bright. Movement sets flotsam and jetsam tumbling about the head; simply sitting up can be a struggle – postural hypertension sending you giddy. Sights and sounds take longer to travel to the brain, the neural pathways fogged and furred with white noise and static. You are death, ever so slightly warmed up."


He has a website, and he's on Facebook and Twitter.
Amazon lists a number of books that he's written, which I think are mainly about Liverpool football club, and he's also published some fiction.

He's Tweeted about the blog here:
https://twitter.com/paul_tomkins/status/534055160788836352
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Waking up unable to breath at all, as Paul describes, was one of my most frightening symptoms. The very first time this happened, maybe a decade and a half ago, I figured out the trigger, which was at that time gastric reflux which triggered a lung response. Several years ago I figured out the probable biochemistry, involving PDE4. I treated that with resveratrol successfully. Early this year I figured out that, despite already being tested in earlier years, I had since developed some kind of response to wheat, which results in sudden asthma-like attacks. I now do not usually eat wheat, but when I do (such as the rare occasion when I am out) I take resveratrol.
 

halcyon

Senior Member
Messages
2,482
Waking up unable to breath at all, as Paul describes, was one of my most frightening symptoms. The very first time this happened, maybe a decade and a half ago, I figured out the trigger, which was at that time gastric reflux which triggered a lung response. Several years ago I figured out the probable biochemistry, involving PDE4. I treated that with resveratrol successfully. Early this year I figured out that, despite already being tested in earlier years, I had since developed some kind of response to wheat, which results in sudden asthma-like attacks. I now do not usually eat wheat, but when I do (such as the rare occasion when I am out) I take resveratrol.
I've been very curious if PGF2a could be causing bronchoconstriction in some of us. I have almost constant low-level shortness of breath that gets better when I feel better and worse when I feel worse. Unfortunately I can't find anywhere to get my prostaglandin levels tested.
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I have only briefly looked into PGF2a, but here is something interesting:

http://www.reproduction-online.org/content/136/1/53.full.pdf

Human granulosa cells converted PGD2 into 11b-PGF2a, confirming that these cells possess AKR1C3 activity. PGF2a can also be synthesized from PGE2 via the enzymes AKR1C1 and AKR1C2

Resveratrol works, at least for me, and it works mostly by indirectly elevating cAMP, and intracellular messenger, which in turn lowers intracellular Ca++. One of its major impacts is to decrease PGD2 if I recall correctly.

In addition several inflammatory triggers can increase arachidonic acid synthesis, leading to increased PGE2.

Neither of these paths can be sustained easily, so increased production might be likely to be cyclical - it waxes and wanes. Diet does have an impact on this though.

I am also thinking that our increased arachidonic acid synthesis might at times induce something that resembles salicylate intolerance.

Most places do not test prostaglandins, and often tests are unreliable. This is because many prostaglandins (and I have not looked up the half-life of PGF2a) last only seconds. As a result they have to infer from more stable secondary metabolites, but these can have multiple causes, and so the testing is unreliable. They can do it by taking blood, snap freezing it under special conditions, and then testing that, but I do not know the details only that the seconds time limit mean its tricky and a specialized process that has to be done in the lab - you can't send the blood away for analysis.
 

halcyon

Senior Member
Messages
2,482
Interesting @alex3619. It sounds like PGD2 can also cause bronchoconstriction and is involved in asthma. It really seems like elevated prostaglandins could theoretically be behind so many of the symptoms we face. For example in the kidneys PGE2 can antagonize vasopressin and might contribute to diuresis and mineral loss. Then of course their link with pain perception. It's also very interesting to me that multiple types of viruses (including those already implicated in ME) modulate the COX-2 pathway.

I haven't looked into resveratrol much but I have been interested in trying quercetin. Have you tried it before at all?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
It really seems like elevated prostaglandins could theoretically be behind so many of the symptoms we face
This is an old model. Dr. Andriya Martinvovic was working on this from the late 80s, and was my doctor for a time. He was getting moderate success treating symptoms, but cure was elusive. Nobody was interested in funding further research though, and he no longer has anything to do with CFS. (He was not using an ME definition.)

A lot of my time in the 90s through mid 2000s was spent trying to figure this out.
 

Gondwanaland

Senior Member
Messages
5,092
Waking up unable to breath at all, as Paul describes, was one of my most frightening symptoms. The very first time this happened, maybe a decade and a half ago, I figured out the trigger, which was at that time gastric reflux which triggered a lung response. Several years ago I figured out the probable biochemistry, involving PDE4. I treated that with resveratrol successfully. Early this year I figured out that, despite already being tested in earlier years, I had since developed some kind of response to wheat, which results in sudden asthma-like attacks. I now do not usually eat wheat, but when I do (such as the rare occasion when I am out) I take resveratrol.
Can you relate your health decline with electromagnetic pollution?
http://forums.phoenixrising.me/inde...ypse-can-we-avoid-it.26545/page-6#post-410674
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Can you relate your health decline with electromagnetic pollution?
http://forums.phoenixrising.me/inde...ypse-can-we-avoid-it.26545/page-6#post-410674

No. I live in a wifi free environment, I do not even use a mobile phone. My power box is still an old type.

This is more about surgery and two months I spent in hospital, plus logistical problems - mail order used to be easy, but they no longer deliver to my address, so my access to treatments is limited. My problems really started about three days after surgery, when I switched from morphine to other opiates, but more likely its also about the blood thinner they used. Eventually I figured out this was a major trigger. I got off the opiates fast but it took me a long time to figure out the blood thinner was an issue, especially since the pharmacist didn't have a clue. Added to that I now suspect many of my issues are due to ACE inhibitors for high blood pressure. This is all a work in progress. In the mid to late 90s my cognition was a lot worse than it is now.
 

Gingergrrl

Senior Member
Messages
16,171
@PJT1971 I did not realize that you were the one who wrote the blog until Bob clarified that so I should thank you directly for such a well written and thoughtful blog!

I don't understand most of the scientific things that get posted either (assuming that is what you meant) and you are not alone in that!

I also want to welcome you to PR!
 
Messages
55
Location
Auckland, NZ
I would do anything to play football again, Paul...

I do still kick a ball around inside my room - but I can't even keep up with my 1 year old niece, whom walks about like a drunken cowboy.

Anyway, I've been a Liverpool FC fan for over 30 years and have always enjoyed your work.

Thanks for this piece.
 
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