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New Research to Explore Role of Online Peer Support on Phoenix Rising Forums

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 22, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog


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    aimossy, MeSci, Ema and 4 others like this.
  2. Firestormm

    Firestormm Senior Member

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    Nice going Mark. I very much look forward to hearing more from the two researchers about how exactly this project will meet it's aims; and I extend a warm welcome to Neil and Anna. Thanks for coming on-board :)
    aimossy, WillowJ and Esther12 like this.
  3. peggy-sue

    peggy-sue

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    Welcome from me too. :)

    Interesting too, in the light of some comments published by the weaseley school which said that participation in online support forums was an indicator of "poor recovery". :devil:
    Esther12 likes this.
  4. Esther12

    Esther12 Senior Member

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    We're still waiting for the PACE results on membership of a patient support group as a predictor of treatment response. We had an indication from a conference poster that it made no difference either way, but it would be good to have some results. It would also be good to be able to compare and contrast effect on more objective and subjective outcome measures, to see if there was an difference.

    I am a bit wary of having groups like this studied by academics, as it can go wrong and cause more harm than good, even with the best of intentions. (I briefly discussed this with Mette, another researcher looking at PR: http://forums.phoenixrising.me/inde...from-the-phd-student.22274/page-4#post-357171 )

    Hopefully any judgements that are made will be discussed and debated with others on here, before being published, and presented as an expert opinion to be trusted.

    But then, the greatest thing I have gained from the peer support on this forum is far greater scepticism of the way academia works, and a better understanding of the harm that has been done to those diagnosed with CFS by poorly done or misleadingly presented research - five years ago I'd have assumed research could only be a good thing! Hopefully this will lead on to work which is helpful for patients.

    Welcome Neil and Anna - best of luck with not making things worse!
  5. Sasha

    Sasha Fine, thank you

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    Welcome to the forums, Anna and Neil, and well done Mark for bagging such good researchers to do such an interesting project.

    Looking forward to taking part!
    rosie26 and Esther12 like this.
  6. peggy-sue

    peggy-sue

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    I think too, that if you're doing the "Lightening-your-wallet-process" you are banned from using forums - in case you get support from the loonies there for the dangerous notion that ME is real.........
    rosie26 likes this.
  7. SpecialK82

    SpecialK82 Senior Member

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    Very exciting stuff Mark - a great bonus to being studied is the ME/CFS education it will provide to the researchers. What a win-win all around!!
  8. Bluebell

    Bluebell More % Neanderthal than Adreno but less hairy :-D

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    Dear Anna and Neil,

    Welcome, and good luck with your studies!

    I'm relatively new here, but I've already been struck by how much this website is a resource and inspiration for people.

    I have not been a member of any other forum that is specifically devoted to one health issue/a set of interrelated health issues like this one is, so I don't have a lot of experience in the genre, but I get the impression that this is a pretty unique place.

    What first impressed me was that there are so many members here who are willing to spend time and care to help other people with their questions and concerns. The help ranges from technical medical information to emotional support to shared humor.

    As examples of how key a resource this site is, and how the site has influence far beyond its own pages, here are 2 external websites (blogs) that I ran across recently when I was doing an external search engine search on various "methylation" search terms, which frequently mention this site and quote information from it:
    A. A blog called quixoticmeblog references PhoenixRising often. (When I searched his blog for the word "phoenix", it appeared to return 7 pages of results.) Example pages:
    - http://quixoticmeblog.blogspot.com/2012/02/plunging-into-b12-protocol-today.html
    - http://quixoticmeblog.blogspot.com/2013/01/my-methylation-panel-results.html
    B. A blog called howirecovered also references PR often.
    His summary of PR material:
    - http://howirecovered.com/active-b12-therapy-faq/
    His explanation of how PR was an inspiration for him:
    - http://forums.phoenixrising.me/index.php?threads/b-12-the-hidden-story.142/page-138#post-356487

    And below are just two examples of members of the site who have created educational tools that were at least partially inspired by PhoenixRising and then shared them, for free, with other PhoenixRising members, as well as with the general public on the internet:
    A. Member caledonia who created 4 videos and posted them on Youtube:
    Methylation Made Easy: parts 1,2,3,4 - videos
    http://www.youtube. com/watch?v =o4uqEDK6BvM (to go to that address, take out the spaces in front of "com" and "=")
    B. Member kday who created a genetic data analysis program that has become a standard tool for many on PhoenixRising, and for others too:
    GeneticGenie, http://geneticgenie.org
    He has recently been working with 23andMe.com on advancements regarding how his program interfaces with their customers' data:
    http://forums.phoenixrising.me/inde...edback-on-appearance.23555/page-2#post-371966

    I have a question regarding a couple of Mark Berry's initial concerns:
    "Could we ensure that members would not be quoted without their permission?"
    "How can we safeguard the privacy of our members and... not intrud[e] on the private and sensitive discussions that take place?
    He said that he was reassured by you about this, but I am wondering how you will you handle these aspects of your research. Will you include quotations or other details of conversations in your published output? Will members be able to decide not to be included in your study?
  9. Snow Leopard

    Snow Leopard Senior Member

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    The key difference between this and other attempts, is that those involved are actually listening to us when it comes to making hypotheses and such. It is a big difference from an academic saying that they're going to study something regardless of how those who will be affected will actually feel about it.
    Valentijn likes this.
  10. taniaaust1

    taniaaust1 Senior Member

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    Well done Mark for arranging it and getting some researchers going into who arent starting out in negative biased ways (something I wish could happen for all our studies done).

    I have high hopes for this research.. I guess they plan to properly publish it somewhere once its completely? Im curious probably where?

    "Hopefully any judgements that are made will be discussed and debated with others on here, before being published, and presented as an expert opinion to be trusted."

    I was glad to hear that as often there is misunderstandings between ME/CFS researchers and the ones who have this illness themselves.

    Anyway.. Im looking forward to what is will be coming out of all this. Places like PR (and PR itself) have played a huge role in my support, like many of us who just dont have good support in our lives nor good doctors. I think I'd truely be in a hole and very depressed trying to deal with my condition if it wasnt for places like these, instead.. Im living quite happily (well most of the time) with a very severe in my case illness. Ones around me cant believe how happy a person I can be even with all this. I have all you guys here to thank for that.
    Bob and Sasha like this.
  11. Firestormm

    Firestormm Senior Member

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    Mark, Simon and justy like this.
  12. Sasha

    Sasha Fine, thank you

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    Nice coverage - a good advert for us, actually!
    aimossy likes this.
  13. Nielk

    Nielk

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    I am impressed, Mark, of how PR is always looking for ways to improve the site and the service to the patients/members.
    I am excited about this project. I feel that it is a good collaboration where we can all benefit from the knowledge attained.
    What I like about what Neil and Anna are proposing is the fact that they are seeking our input, advice and experience.
    In my view, what is key to the success of this project is for Neil and Anna to be completely educated to the uniqueness of our illness. It is important for them to keep in mind how complex ME/CFS is and how it can involve so many body systems. Actually, everything about it is complex starting from diagnosis (which criteria?) to all the diverse symptoms that "might" be due to the illness - or they might not. The variety of potential treatments runs the full gamut of conventional and alternative therapies with no consensus as to what really works.

    I think that it is because of this complexity that there is such a great need for this forum. We are learning together here and helping each other by comparing notes or by bringing new information to light.

    If I had to have this disease, I am happy that it is now and not 25 years ago when there was no internet and the ability to access all this information at a click of a button. Before I discovered PR, I was sliding down fast into the abyss with the "care" of my GP who was totally misinformed about ME/CFS. Thank God I was able to find all this information which really helped me to direct my health.

    I have a tremendous amount of gratitude towards PR - the people who run it and each and every member.
    SOC, Bob, WillowJ and 4 others like this.
  14. Dr Neil Coulson

    Dr Neil Coulson

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    Dear all,

    Many thanks on behalf of myself and Anna for your welcome. Mark has been incredibly helpful and supportive and we are all looking forward to taking this research forward. There is much that we can learn and I will dipping in and out of the forum to answer any questions and update you on the progress of the studies.

    With very best wishes,

    Neil
    WillowJ, Simon, Moxie and 5 others like this.
  15. justy

    justy Senior Member

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    What a great idea, thanks to everyone involved. I will happily fill in any questionaire or join in any discussion that helps the research take place.
    Before my latest relapse 5 years ago i was heavily involved in setting up peer to peer breastfeeding support groups and all the research shows that these are beneficial for mothers and in turn their babies. I can imagine on line support is a bit different -as 'normal' rules can sometimes be suspended, but all in all i believe peer to peer support to be very valuable in all areas of life.

    How lucky we are to have PR now and other forums - when i was first ill all the support and info i could find on M.E came from 1 library book, with no access to other patients. In an illness where we are offered little or no medical help (or sometimes iatrogenic harm) we need to be able to conncect with other patients for support but also for advice on treatments and doctors who may be able to help us.

    All the best,
    Justy.
    Sasha likes this.
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Similarly, I WISH that there had been some kind of support group available to me a long time ago. I became ill in 1995, and attempted to kill myself a year later, seeing no hope of regaining any quality of life and finding the early symptoms unbearable (especially the daily, unpredictable vomiting), not to mention loss of income and descent into dire poverty. Internet information about the illness (and I didn't know what was wrong with me until 1999 when I found out by chance from a video that was part of my undergraduate course work) could have helped me to identify the illness. Groups like this could have helped me to manage it properly instead of doing what almost all sufferers, encouraged by friends, family, doctors, etc., do - to push myself to try to get back to fitness.

    How many of us might have recovered enough to get back to at least part-time work, save precious relationships, remain independent, etc., if we had had help of the kind available here? How many lives have been lost because such resources were not available...?

    I would like to give a cautious welcome to this research. The researchers appear to have the right, positive attitude. The findings could help us in our ongoing, long-term battles with the psychoquacks who think that such forums are harmful (!). But I am aware that the best-laid plans...

    On a positive note, PR :angel: ROCKS!!:thumbsup:
  17. Firestormm

    Firestormm Senior Member

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    Dr Neil Coulson I do have a couple of questions for you if you don't mind:

    Can you just confirm that the cost of this study is being picked up by your University, and that you intend to publish the results in a Journal. And also if you have a time-frame in mind from start to completion and publication?

    The questions were raised elsewhere and I wanted to pass them along. Thanks in advance :)
  18. Bluebell

    Bluebell More % Neanderthal than Adreno but less hairy :-D

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    Thank you, Neil. There seems to be a lot of goodwill about the collaboration, and I'm sure it will be beneficial for all parties.

    I had been hoping that you and Anna would sign up for accounts here so people would have the option to private-message you via this site instead of using external email to contact you (if they wanted to contact you privately for any reason), so I'm glad to see you have done that.

    I have a question regarding a couple of Mark Berry's initial concerns that he mentioned having discussed with you:
    "Could we ensure that members would not be quoted without their permission?"
    "How can we safeguard the privacy of our members and... not intrud[e] on the private and sensitive discussions that take place?
    He said that he was reassured by you about this, but I am wondering how you will you handle these aspects of your research.
    --Will you include quotations from discussion threads or other details of conversations in your published output?
    --Will members be able to decide not to be included in your study?

    Apologies if Mark Berry already explained what your answers were and I just missed that part.

    I noticed that there is currently an active thread here about how the site is indexed in search engines such as Google, and it explains that the content of all our posts (except for those in the "members only" part of the forum) are available to the whole world anyway, and I do appreciate that once they are in the public domain, they are open to be used/quoted by anyone for any reason.
  19. Simon

    Simon

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    First, Welcome to Neil and Anna - I'm really looking forward to your project.

    What this field desperately needs is research that actually takes in the patient perspective, by asking them, just as you plan. This is in stark contrast to the approach Mark highlighted that relied solely on speculation to understand patient motives and behaviours:
    So the authors of this study started off with a worthwhile goal - looking at forum use in ME vs other illnesses. But sadly they simply relied on internet searches to generate their data, and at no point consulted patients using the forums as a way of understanding why patients actually used forums...
    Exactly - I'm actually still shocked that peer reviewers don't pick up such clear-cut example of likely selection bias explaining results. But maybe I shouldn't be anymore, given what else passes peer review.

    And thanks for a fine article, Mark
    MeSci, biophile, Firestormm and 2 others like this.
  20. jimells

    jimells Senior Member

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    Hello Dr Neil and Anna. I am very much looking forward to the results of your research, and especially to Valentijn 's analysis of it! :)
    MeSci likes this.

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