The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

We Are Death, Warmed Up - Blog by Paul Tomkins

Discussion in 'General ME/CFS News' started by Bob, Nov 16, 2014.

  1. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,942
    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
     
    Last edited: Nov 16, 2014
  2. alex3619

    alex3619 Senior Member

    Messages:
    12,394
    Likes:
    34,725
    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.
     
    svetoslav80, Gondwanaland and Bob like this.
  3. halcyon

    halcyon Senior Member

    Messages:
    2,269
    Likes:
    5,313
    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.
     
    Last edited: Nov 19, 2014
  4. alex3619

    alex3619 Senior Member

    Messages:
    12,394
    Likes:
    34,725
    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

    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.
     
  5. halcyon

    halcyon Senior Member

    Messages:
    2,269
    Likes:
    5,313
    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 likes this.
  6. alex3619

    alex3619 Senior Member

    Messages:
    12,394
    Likes:
    34,725
    Logan, Queensland, Australia
    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.
     
  7. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,509
    Likes:
    3,490
    Can you relate your health decline with electromagnetic pollution?
    http://forums.phoenixrising.me/inde...ypse-can-we-avoid-it.26545/page-6#post-410674
     
  8. alex3619

    alex3619 Senior Member

    Messages:
    12,394
    Likes:
    34,725
    Logan, Queensland, Australia
    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.
     
  9. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,509
    Likes:
    3,490
    Interesting. My health also went downhill with blood thinners, esp. wheat tolerance.
     
  10. PJT1971

    PJT1971

    Messages:
    1
    Likes:
    2
    Leicester, United Kingdom
    Thanks for sharing this on here, Bob. I wish I understood some of the replies!
     
    Bob and rosie26 like this.
  11. alex3619

    alex3619 Senior Member

    Messages:
    12,394
    Likes:
    34,725
    Logan, Queensland, Australia
    I think so, a long time ago. Its theoretically helpful, but no great success stories come to mind. Probably is better in combination with other things.
     
    halcyon likes this.
  12. alex3619

    alex3619 Senior Member

    Messages:
    12,394
    Likes:
    34,725
    Logan, Queensland, Australia
    If there is anything you would like to know more about most of us would be happy to expand on points.

    I have found some answers for my ME, some partial answers, but mostly I only have questions.
     
    rosie26 likes this.
  13. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,132
    Likes:
    23,343
    USA
    @Bob thank you for sharing such a well written blog and I enjoyed reading it.
     
    Bob likes this.
  14. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,942
    England (south coast)
    You're welcome Paul. And a big welcome to the forum! :)

    I hope you'll stay a while and see what the forum has to offer, if you can afford the distraction!

    BTW, everyone, this is Paul, the author of the blog.
     
    Gingergrrl and alex3619 like this.
  15. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,132
    Likes:
    23,343
    USA
    @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!
     
    Bob likes this.
  16. Mogwai

    Mogwai

    Messages:
    55
    Likes:
    76
    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.
     
    Last edited: Nov 20, 2014
    Bob likes this.

See more popular forum discussions.

Share This Page