1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Health News Ireland: Tom Kindlon: The Fight of his Life

Discussion in 'General ME/CFS News' started by Firestormm, Jul 2, 2013.

  1. Firestormm

    Firestormm Guest

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  2. alex3619

    alex3619 Senior Member

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    "If Tom Kindlon had any advice, it would be this: “Take the illness seriously. And, remember, the more you push against it, the more it will push back…"

    Thanks for this interview.

    Tom is right. I have to focus my energy where it is worth spending, and I am lucky it doesn't take too much to do a lot of what I do. A simple street march would floor me, but an online protest I can handle.
     
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  3. Desdinova

    Desdinova Senior Member

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    Decent article, poor choice of photo though.
     
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  4. WillowJ

    WillowJ Senior Member

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    Simon and ggingues like this.
  5. Valentijn

    Valentijn Activity Level: 3

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    I think my mobility scooter could tow a few protestors :D
     
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  6. Simon

    Simon

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    Excellent interview by Tom Kindlon
    Keep up the great work
     
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  7. Firestormm

    Firestormm Guest

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    Yes. Thanks Tom Kindlon for getting this out there. Some very apt comments.

    I must admit that this one got me thinking overnight, which is why I think I didn't make my own comment earlier.

    When I first read that I thought "but this guy reads science papers and has even published one. And there's no way I could do that; and yet I find that often I can only read novels..."

    So it made me think. I wasn't thinking of critiquing you my friend; but I did stop and ponder. I don't have a background in science and so for me science papers - reading and understanding - would be a stretch even when I was well.

    I do struggle very much in comprehending and then regurgitating information now, even in composing letters; whereas before I obviously didn't. I struggle with reading and comprehension generally now; cognition is a MAJOR concern of mine.

    But I think your point here is that you need to pick and choose carefully what you can and can't do; and that's precisely the same as me. I can still read. I can still comprehend. I can still write letters. It all just takes so much longer to do.

    We all need to make choices with what we can and can't do and what we want to do (our priorities) based on the ability we now have to do them; and whether or not the sacrifice is worth pursuing it. The sacrifice being 'energy' and also the things we decide not to do.

    So thanks for the article and for the author for publishing the words from you that he did. It made me think and that's not always a bad thing :)

    Edit: have edited a bit.
     
  8. Enid

    Enid Senior Member

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    Stuck with it are we not until the current and marvellous science (those working very hard now to understand) solve - whoopee for them - in the meantime did you know thousands even millions blighted.
     
  9. Esther12

    Esther12 Senior Member

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    Yeah - I've not read a novel since PACE was published, and I started realising how spun and dishonest lots of CFS research is, and how little interest there is in this from most researchers. Five years ago, I was not putting any energy into reading CFS research, CFS news, or anything CFS related; and was just playing about as much as I could (I think my partner preferred me using my time that way).

    TomK seems to achieve more while he's ill than I did when I was well! Dedication to a cause can allow much to be achieved even when very ill.
     
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  10. Enid

    Enid Senior Member

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    All very apt - no single - and we together will force medicine forward.
     
  11. Tom Kindlon

    Tom Kindlon Senior Member

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    Just to add to a little bit on this.

    My cognitive abilities have varied across my illness.

    For the first four years, I was mildly affected (once I gave up sports and lived a quiet life), and was able to manage a full academic workload. It was quite a struggle and I did have some cognitive issues (memory not as good, big increase in clerical errors, etc.).

    When I became severely affected initially, I had major cognitive problems.

    I could only read a couple of pages of a novel a day. I found it frustrating because not much might happen in a couple of pages. Also it took me so long to read it that it was very hard to remember the storyline. So I ended up switching to comics: Asterix, Tintin, Garfield, Calvin and Hobbes and even Beano-type comics. These suited my cognitive abilities and also were not as exhausting/didn't have the payback. I was basically bedbound at this stage and didn't have a TV for around 8 months. Things improved a little and I was able to read a bit more and watch recordings of shows, stopping and starting the video every few minutes (and sometimes having to rewind it to catch exactly what was happening/said).

    For another nine years or so, I still had quite reduced cognitive energy. In that period I might only have read a handful of research papers.

    I didn't do any studying either.

    So it wasn't due to using a lot of mental energy that I was restricted physically.

    In the last 8-9 years, I have started reading some research papers.

    So, as was pointed out, if one can read research papers, one can probably read novels. So in this period is more to do with wanting to do something constructive with my mental energy and my pre-existing knowledge and abilities (i.e. I recognise that not everyone with the illness could do what I do), that I don't read novels. But I still am restricted cognitively. I was studying mathematics and was quite able e.g. 6th in Ireland in Irish National Mathematics Contest, but would find looking at any college-level mathematics quickly tires me out mentally. So I'm largely existing on pre-existing knowledge and abilities along with general knowledge that has built up. Letters are not that demanding to write - a forum post could be just as long. It is more about the discipline involved in going back and working on the wording so there are not too many extra words, etc. Writing the paper certainly involved a lot of work. But it was written over 15 months and was based on many years' reading and observations. I also made a lot of extra sacrifices during that period e.g. usually I like to watch a sitcom at the end of a day, which is often the only TV I watch, but I cut that out on dozens of days when working on the paper. No academic could afford to take 15 months to write a paper.

    I think my increased mental stamina may be due to high doses of Omega-3 EFAs I started taking after reading what Basant Puri was saying. I also take acetyl l-carnitine and l-carnitine which again I think may help my cognitive stamina. I live in a quiet environment and able to do things at my own pace: trying to rush myself e.g. when reading, quickly exhausts me.

    All the best.
     
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  12. Sasha

    Sasha Fine, thank you

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    That's an amazing achievement under those cognitive restrictions, Tom! :thumbsup:

    I did a fibro/ME Medline search yesterday for Dr Fred Friedman as part of his drive to recruit new blood to the field via the IACFS/ME conference and your name came up twice!
     
    Tom Kindlon likes this.

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