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News from New Zealand and the Pacific Islands

Discussion in 'General ME/CFS News' started by Hutan, May 19, 2018.

  1. Hutan

    Hutan Moderator Staff Member

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    That is a terrific article.

    The author is Dr Cathy Stephenson and it looks as though she has some connection with WellMe (Wellington patient support group). I'd love to see Dr Stephenson presenting at a conference, perhaps the Royal College of GPs one. If all GPs understood what she has written here, we'd be a long way ahead.
     
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  2. theJOYdecision

    theJOYdecision Senior Member (Voting Rights)

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  3. Ravn

    Ravn Senior Member (Voting Rights)

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    Going from bad to worse: big NZ GP conference happening in Rotorua this week. Speakers include the three we've been discussing here: Chris Kenedi, Kristy Bolter and Megan McEwen. As if that wasn't enough there's also Mel Abbott (Empower, a version of the Lightning process). http://www.gpcme.co.nz/speakers.php

    Can someone please stop these people, with or without the help of paper circles, just STOP them!!!

    According to the conference website (http://www.gpcme.co.nz) there'll be another event in Christchurch in August, this one without the first three but with Mel Abbot who has 3 sessions, one of them for nurses (http://www.gpcme.co.nz/south/programme.php).

    [Posted this in both the "News from New Zealand and the Pacific Islands" and the "Video clip of a Australasian conference on MUS, mentions ME" threads.]
     
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  4. theJOYdecision

    theJOYdecision Senior Member (Voting Rights)

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    Who is choosing these people as speakers? We actually need materials or something to counter them. I have a friend who thinks this Mel person is the best thing since ever. It may actually have destroyed our friendship.
     
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  5. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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    It’s the old ‘marketers trump facts’ in public awareness campaigns.
    They are getting reach with GPs and nurses because it’s a marketing campaign, funding comes from selling that idea. Whereas we’re just providing information, and not very ‘sexy’ (inspiring) information at that.

    People say they want answers but really we all want a fix, a cure, a solution. Unfortunately they don’t have to live with the consequences of the (appealing to all including patients) gamble. We do. We have. ...I’m really so horribly sad to think: more pwME will.

    [edited GPS to GPs]
     
    Last edited: Jun 20, 2019
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  6. theJOYdecision

    theJOYdecision Senior Member (Voting Rights)

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    Maybe we need to make it sexy. Hmm someone was inviting people to come forward about their experiences with the lightning process. If a media brief found its way into the hands of local newspapers, dr’s offices etc.... “Patients Furious as GPs Conference Teaches Harmful Alternative Practices”. A better editor would find an even more sensationalised title. Honestly we wouldn’t even have to get a media outlet to pick up on it. We could write a faux paper ourselves. Done well it would be quite influential at least in getting our perspective across.

    That last paragraph as a direct quote from a patient would wrap up such an article nicely.

    Seriously, if a faux paper like this with maybe 3 articles was delivered to the doctors attending and it had enough direct appeal at least some doctors who swallowed this crap might have second thoughts about parroting it without doing their own due diligence (with resources we would point them to). And it might be a considerable embarrassment to the organisers that next time they might consider gauging our perspectives. Is this idea worth pursuing? Are logistics able to be overcome-eg delivery to said GPs? Give me good material and I could write a draft of at least one article.

    Just noticed the Mel Abbott’s sessions are already full. I’m ready to cry.
     
    Last edited: Jun 20, 2019
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  7. rvallee

    rvallee Senior Member (Voting Rights)

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    So, in a sense: clickbait has invaded medicine? Sounds about right.
     
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  8. Trish

    Trish Moderator Staff Member

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    Moderator note: Some posts have been moved to the members only area at the request of the poster who started the discussion of a video.
     
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  9. Hutan

    Hutan Moderator Staff Member

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    Kathryn Ryan on Radio National (New Zealand) will have an item on Ron Davis and a 'blood test for chronic fatigue syndrome' tomorrow (25 June 2019).
    Screen Shot 2019-06-24 at 2.50.34 PM.png
    The promo made it sound as though it would be an interview with Ron Davis.
     
  10. Daisybell

    Daisybell Moderator Staff Member

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    This is live now
     
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  11. Daisybell

    Daisybell Moderator Staff Member

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    Ron Davis is talking about Whitney
     
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  12. Hutan

    Hutan Moderator Staff Member

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    It's just finished. Quick response is that there was nothing new there for people who are closely following ME/CFS research apart from Ron's certainty that the nano-needle is a diagnostic tool to indicate that something is wrong. Ron talked about the next step being to make it user friendly and 'closed in' (as in a 'black box' type of thing). And saying that they have 8 other devices in progress but not so far along that will hopefully be able to do specific tests. There was no caveat/caution other than the device hasn't been tested on other illnesses.

    From an advocacy point of view, it sounded quite convincing. People with little knowledge of CFS are likely to get the idea that this is a biological illness.

    I have some notes that I'll write up.
     
  13. Esther12

    Esther12 Senior Member (Voting Rights)

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    I hope this nanoneedle works out or else I fear it could be quite unhelpful... given the series of false leads there have been around CFS I'd want to be more cautious until we had independent replication, particularly as I don't see much cost to being extra cautious.
     
  14. Hutan

    Hutan Moderator Staff Member

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    Rough notes - not perfect.
    Interviewer: CFS is a debilitating, mysterious and often minimalised illness. Many people with it complain that their condition is regarded as imaginary. There has been a lack of a reliable test. Dr Ron Davis has identified a diagnostic test, in a small pilot study.

    In 2013 Davis was ranked amongst greatest living inventors, many advances in the field of genetics can be traced back to him. When his son Whitney became sick, he turned his attention to CFS.


    Davis: Patients don't look sick but are severely affected. On standard tests they seem perfectly healthy. Whitney is bed-bound, tube-fed and yet on standard tests he looks healthy. The Institute of Medicine suggested that 80% of patients are undiagnosed. Currently diagnosis requires experts and there aren't many experts. A diagnostic test will help validate patients and help doctors figure things out.

    Whitney took several years to get diagnosed and that was only because he worked at it and I encouraged him. Initially we thought that doctors would figure it out. I re-focussed my work on ME/CFS, wrote multiple grants without success. Teamed up with OMF, a charity, that could provide funding.

    The disease is multi-system, brain, immune, gut. Complicated. But I'm optimistic that we can cure this disease.


    Interviewer: this new diagnostic tool..


    Davis: Had already developed this device, chip size is so small you can't really see them, they are on a wafer. It was being tested for use in assessing the utility of drugs acting against cancer and bacteria. Saw that patients can't produce energy. Adding salt to the cells required the cells to use energy pumping the salt out, so it stresses the cells.

    Need to make the device 'next-generation', closed in (i.e. to make it user-friendly, more robust). The device hasn't been tested on other diseases.

    There are 8 other devices, not so far along. Hopefully they can be used to separate CFS from other diseases.

    We have already found a couple of drugs that seem to help the cells survive the salt stress. We want to find an already approved drug that helps, to speed the process.

    Next thing is to find the cause. We are collecting a huge amount of data from patients. Have found some genetic abnormalities. Of the 66 patients investigated, all have the same mutation. You observe, then ask 'what's causing that?' and iteratively track back to the primary cause.

    It doesn't appear that we will need to continuously treat or that there is permanent damage. We have one patient who was bed bound and she is now over it; she can run 10 miles a day.


    Interviewer: A listener has responded. They thank you Ron for your efforts, especially when they have taken you away from the care of your son. Has a son, bed-bound who has missed his secondary school years. Medical training continues to perpetuate the idea that CFS/ME is psychological issue.


    Davis: Yes, but things are improving. Scientific data shows it's not psychosomatic. There are many labs working on this, finding molecular abnormalities that cannot be caused simply by thinking. That view that the condition is psychosomatic, it's absolutely incorrect, I would call it barbaric. Even in 2015, the Institute of Medicine report said that it is clearly not psychosomatic. We need to update the thinking and we then need to find out how to treat. Initially, we can treat the symptoms, and most doctors can treat the symptoms. Many patients seem to have mast cell activation - and there are drugs to alleviate that.


    Interviewer: What can patients do?


    Davis: Advocacy. Phoenix Rising site, Open Medicine Foundation. We run a symposium every year - live-streamed and archived on You Tube. We have just established another collaborative centre on Harvard, they have a big hospital there so work can be done with patients. And we have a new site in Sweden, they are doing spinal taps. There is progress, but we need money.
     
    Last edited: Jun 24, 2019
  15. theJOYdecision

    theJOYdecision Senior Member (Voting Rights)

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    I woke up this morning to my best friend messaging me about this :) Even just getting the news out there to the public, this is real and this is serious.
     
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  16. Hutan

    Hutan Moderator Staff Member

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    ladycatlover likes this.
  17. mango

    mango Senior Member (Voting Rights)

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    Thanks a million, @Hutan! Your notes are very very much appreciated, super helpful :hug:
     
  18. Hutan

    Hutan Moderator Staff Member

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    The Radio National interviewer followed up the interview, saying that they had had lots of feedback from sufferers of CFS. The interviewer mentioned a communication from the Auckland patient support group, noting that they have a registered nurse available to provide support and giving out an 0800 phone number.

    Excellent thinking from that group.
     
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  19. theJOYdecision

    theJOYdecision Senior Member (Voting Rights)

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  20. theJOYdecision

    theJOYdecision Senior Member (Voting Rights)

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    Also posting here and on the NZ Awareness group FB page.
    Partial verbatim transcript of the interview from approximately point 14:05. Merely edited for umms and words in brackets are inserted for clarity.
    “We’ve had the NIH the National Institute of Health and the Centre for Disease Control who view it as a psychosomatic disease by many, many people in those agencies. But the scientific data says that’s not true. And there’s now tremendous amounts of scientific data. Our diagnostic test is only one of them. Many labs have shown that there are a lot of abnormalities that are molecular abnormalities that cannot be caused by simply thinking. And that whole idea [that the illness is psychosomatic] needs be be sponged out. That is absolutely incorrect in fact I would call it barbaric. And to deal with patients with this kinda concept [that the disease is psychosomatic] is malpractice. And they need to stop it.” - Dr Ron Davis interview with Radio NZ 25th June, 2019.
     
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