New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Our New NIH Clinical Investigator

Discussion in 'General ME/CFS News' started by Justin30, Feb 22, 2016.

  1. Justin30

    Justin30 Senior Member

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  2. Justin30

    Justin30 Senior Member

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    This may actually make you puke in your mouth a bit....while reading.

    Can someone if possible provide the email addresses to all key players in this study and Francis Collins so that we can request a change....in the LEAD INVESTIGATOR based on bias prior to the studies start...

    This has got to be some sort of cruel joke.

    The Question is will PACE Happen in America too so we can fight from our beds and homes for another couple decades????

    Im beside myself.....
     
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  3. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Last edited: Feb 22, 2016
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  4. JaimeS

    JaimeS Senior Member

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    I'm... speechless.
     
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  5. anciendaze

    anciendaze Senior Member

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    plus ça change, plus c’est la même chose.

    The tradition of Stephen Straus and W.C. Reeves continues.

    The message appears to be "it is important for these patients to realize we aren't going to do anything, they are on their own."
     
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  6. rosie26

    rosie26 Senior Member

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    More heavy psychological interpretation of a painful physical symptom of a disease. Fibromyalgia was one of my very first signs that something was very wrong...long before my mild onset ME kicked in.

    I now view fibromyalgia as a symptom of ME in my own case.
     
  7. Justin30

    Justin30 Senior Member

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    I was in a whiplash car accident which started with me not fully recoverying I had bits of pain all over certain areas of my body. It was also getting tougher to wake up in the am.

    6 months later flu + infection+ another car accident and I have the craziest ME Symptoms. 41 to be exact.

    I am sure if i told anyof these guys about my symroms they woukd say i am a hypochondriact. Brutal......and sad
     
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  8. rosie26

    rosie26 Senior Member

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    Fibromyalgia could be one of the first responses to the disease process or injury. Maybe some don't progress any further than fibromyalgia alone, but others continue onwards and progress to full-blown diseases.
     
  9. alex3619

    alex3619 Senior Member

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    Notice the reasoning in the transcript ... maybe, might be, therefore (in a conclusive sounding way) ...
     
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  10. rosie26

    rosie26 Senior Member

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    He used the word 'right' at the end of a sentence as well. I kept wanting to say 'wrong' to him.
     
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  11. Sean

    Sean Senior Member

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    That style of language is common from the BPS crowd. They often start with highly conditional qualifiers (may, might, could, etc), but by the end of the paper/article it become definite language (is, must, etc).

    All wrapped up in saccharine sweet words of concern about the 'terrible plight patients find themselves trapped in by cultural forces', and the 'need to offer them a face-saving way out'. Etc.
     
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  12. Justin30

    Justin30 Senior Member

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    It is just so strange how it manifests in so many people. So many triggers, so many symtoms. My symptoms are not always at the same time they shift week to week day to day. Its crazy.

    Cort Posted some info on MEAction with regard to the lead investigator and it is worth a read.
     
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  13. searcher

    searcher

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    Hi Justin- I wanted to let you know that we are working on finishing a petition reconciling the different submissions we have received and are also writing the NIH directly about Walitt (and others with similar views.)
     
  14. Justin30

    Justin30 Senior Member

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    Great news Thanks for replying searcher.
     
  15. alex3619

    alex3619 Senior Member

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    Look at it this way. Aside from comordities and genetic variation, a lot of what is happening is dynamic. ME and CFS appear to involve all the command and control pathways. Immune, hormone and neurological control is all modified. There would be attempts by the body to fix things, and those attempt fail. But the body will keep trying,. With all three communication systems out of whack it is probable this will have a changing impact.

    In 1993 I became aware of research that is largely unpublished (I was a test subject) in which symptoms can be shown to vary by diet. Since the research was never completed its hard to be sure, but it looks like different food components, especially different fats, have an impact.
     
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  16. rosie26

    rosie26 Senior Member

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    Yes, I have learned so much since coming to PR and listening to others histories of this illness. It seems we are all coming in from similar and different angles but coming onto the same pathway and experiencing the same strange/hellish PEM experience which connects us all to ME and tons of other symptoms experiences as well.

    It sounds like you are in the severe range or severe-moderate the way you describe your shifting symptoms. I haven't read your history. I must have missed it. (Which reminds me I must write a proper history of my experience sometime soon). Yes, some major symptoms are constant, others come in, some stay longer, more come on top of that, a few go and all this happens hourly, daily. I found as the years passed the shifting of symptoms began to ease up and I began to get some good 'breathers'. Keep resting. I still get the shifting of symptoms but I have a bit more stability now in regards to that particular part of the many parts to ME.

    My history of ME began when I was 20 years old then mild ME hit around 30 years and then I did the horrid spiraling down from there each year and at 36 years I hit severe ME - a wicked, wicked experience, that is.


    I will try and find it, thanks.
     
  17. Justin30

    Justin30 Senior Member

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    In 1993 I became aware of research that is largely unpublished (I was a test subject) in which symptoms can be shown to vary by diet. Since the research was never completed its hard to be sure, but it looks like different food components, especially different fats, have an impact.[/QUOTE]

    Such a shame this info gets lost and not explored...lack of funding...Alex did you notice benefits from it?

    Based on KDMs assessment been sick for 1.5 years although only started to present with strong sysmptoms about 8-9 months ago. He strongly tries to modify the innate immune sytem found in our bowels and recommends a diet protein,veg and fats. Avoid carbs like the plague. He feels the unbalnce is gut bacteria, coinfections, viruses are what keep this thing going....recovery takes years unless your of a 15% group which i think it is then much more difficult to get well.

    This brings me back on point to the fact that KDM PHYSIOLOGIST AND INTERNIST who has been studying and treating the disease for 30 years who has seen 18,000 plus clearly does not think this is anyway a pschosomatic illness buy anymeans. And i would add everyother top Dr as well.
     
  18. JaimeS

    JaimeS Senior Member

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    The issue is in what we call a 'top doctor' versus what they call a 'top doctor'....
     
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  19. Justin30

    Justin30 Senior Member

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    I couldnt agree more!
     
  20. alex3619

    alex3619 Senior Member

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    I have discussed this at length a few times. The treatment had about a 60% good improvement rate, 30% partial or little improvement , and 10% actually got worse. No good numbers of cures, and due to limitations in the study we cannot be sure these were not natural recoveries. The doctor involved was one of the early CFS researchers here, and was a target for our medical watchdogs, along with other CFS docs at that time. The last he was doing research I think he was looking at exhausted female athletes and hormone changes in them to try to find a clue. He is no longer involved with CFS research or treatment.

    Some of the things being tested were autonomic retraining and high dose omega 3 therapy, though manipulation of fats in the diet was a core theme, as these govern eicosanoid synthesis.

    Its interesting that he had three tests he was investigating that might have been investigated to see if they were clinically useful or even diagnostic. One was for metabolic rate, one was for autonomic testing, and the last was a simple opthalmascope, which is now the subject of as yet unpublished research I am waiting for out of the UK, though I do not know if the findings are the same yet.

    I was in the 30% partial improvement group. It worked for a while, but with my doctor shut down and being unable to seek his advice I had to abandon the approach when I ran into problems, though this was years later.

    Look up Gray and Martinovic on PubMed, they have one paper there. I lived just a few houses up from Dr Martinovic's surgery.
     
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