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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. olliec

    #MEpedia: Page on Exercise

    We need to stay mindful of what should go on the Exercise page, versus the others, especially the PEM page and the 2-day CPET page. Sometimes content may need to go on both. I've added explicit text, for example under PEM it now says "Read the main page: Post-exertional malaise."
  2. olliec

    #MEpedia: Page on Exercise

    I've added a ref to Nijs 2011, and Learmonth 2014 to http://me-pedia.org/wiki/Exercise And a ref to Nijs 2010, Van Oosterwijk 2010 to http://me-pedia.org/wiki/Post-exertional_malaise Could you work those into the the text?
  3. olliec

    #MEpedia: Page on Exercise

    I ran out of steam last week with this page, but am now doing some more work on it. First off, fixing a couple of broken refs in the page. If anyone else is around and wants to jump in, I'd appreciate any help!
  4. olliec

    #MEpedia: Page on Exercise

    The relevant pages of the IOM report, that list studies that looked at the effects of exertion are pages 84-86, here http://www.nap.edu/read/19012/chapter/6?term=exercise#84 I've added that direct link to the PEM page. I'm compiling some of the studies from the IOM report to make sure we have...
  5. olliec

    #MEpedia: Page on Exercise

    I've replaced the VanNess 2010 chart pair with a better version (sadly the study is behind a paywall), and aligned all the charts to the right a bit more neatly with captions making clear where they came from. I've also added the IOM report PEM chart. I've also added several more talks by...
  6. olliec

    #MEpedia: Page on Exercise

    Go for it!
  7. olliec

    #MEpedia: Page on Exercise

    Thanks Sasha. The key facts one-pager from the IOM has a nice chart in it too http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf
  8. olliec

    #MEpedia: Page on Exercise

    The 2010 VanNess graphic is really hideous the way it displays, apologies to peoples' eyes, I will make improvements tomorrow (I copied the image from the PEM page).
  9. olliec

    #MEpedia: Page on Exercise

    For my brain at least I'd prefer to see all the relevant studies including before restructuring, but don't let me stop you if you see improvements to make now. The page doesn't flow well at the moment and should explain the story, perhaps: 1. Exercise is good for healthies but not ME patients...
  10. olliec

    #MEpedia: Page on Exercise

    Jaime that's a great list. Later we can refine/focus more on the better studies, but for now getting them all listed is useful so anyone can easily find them. I am happy to add the references, but it will be tomorrow as need to rest soon. Does anyone know of any study charts that we are...
  11. olliec

    #MEpedia: Page on Exercise

    I found a talk by Christopher Snell and several by Staci Stevens and have added those, so the page now has eight talks by Workwell folk on it. It's so great they can measure our disability and objectively deflect accusations of lack-of-effort.
  12. olliec

    #MEpedia: Page on Exercise

    Jaime, the 2013 Snell study is referenced in the page already. I've moved Cochrane & PACE into the "Studies" section, so a little more visible than "See also". Maybe someone can write a paragraph to mention these studies and put them in context, especially with the criticisms.
  13. olliec

    #MEpedia: Page on Exercise

    It's certainly not a recommendation and I think text elsewhere in the page makes clear that exercise carries risks and is very difficult, but I have added to the CDC exercise recommendations (alongside the UK section). Some restructuring is needed to improve the flow of the page and include the...
  14. olliec

    #MEpedia: Page on Exercise

    I actually added this (two-part) talk by Mark VanNess that he did in Vancouver a few weeks ago which is really interesting: Part 1 Part 2 He says at a forthcoming meeting he'll be outlining recent results from work he's done looking at ventilatory dysfunction in ME patients. If we wanted an...
  15. olliec

    Can you help? Working on mitochondria page!

    I have created a blank page with a content framework for Gerwyn Morris who published many papers with M Maes, to make it easier for anyone with sources about his work & history to add. It includes a link straight to all his work on Pubmed. http://me-pedia.org/wiki/Gerwyn_Morris
  16. olliec

    Can you help? Working on mitochondria page!

    If a study is poor then I wouldn't want to exclude it, but rather include it under a section "Flawed studies" or specifically detail why it is poor - was it cohort size, lack of blinding, the definition used, dubious funding, etc. If we start excluding sources that means private decisions behind...
  17. olliec

    Can you help? Working on mitochondria page!

    @barbc56 We have a page on Simon Wessely. There is also a page on the UK Breakspear Hospital which contains information about complaints and rulings against them. Inclusion is certainly not a recommendation, and the goal is to provide as good a range of factual, encyclopedic information as we...
  18. olliec

    Can you help? Working on mitochondria page!

    I've added the bulk of those as refs now Jaime, and also this study which I think is relevant. https://www.ncbi.nlm.nih.gov/pubmed/23834645
  19. olliec

    Can you help? Working on mitochondria page!

    @Silencio The usual format for page names is like "Ronald Davis", so if you search for them and an existing page is there, you know what to link to. He had one already but under Ronald not Ron. I've added references to the page for all the studies Jaime mentioned. What other studies are missing?
  20. olliec

    Can you help? Working on mitochondria page!

    I've tweaked the Davis and OMF links to point to the existing pages for both and added a source to support a statement that a second metabolic study is underway.
  21. olliec

    Can you help? Working on mitochondria page!

    I'm really keen to hear from others how this page can be improved and there are certainly many studies that have not yet been added. The page has had over 4,000 page views already (including those editing it) so important we improve it, especially in light of the incoming Naviaux studies. I've...
  22. olliec

    Why MEpedia is flawed and potentially harmful to advocacy

    I welcome all feedback, but it is hard to read such strong criticism (especially that the project is "harmful") when so many patients have made significant contributions and it is still less than a year old. As a community (open source, literally) project it is up to the wider community to move...
  23. olliec

    Why MEpedia is flawed and potentially harmful to advocacy

    I'm disheartened to read your criticism. I'm one of the contributors to MEpedia and I think you have misunderstood both the aims and function of the project. MEpedia is an encyclopedia, so it does not express views and it certainly does not recommend treatments. It exists to state the facts, and...
  24. olliec

    Forward ME Group: Minutes for meeting held on 24 May at House of Lords

    LA Cooper is already making great strides helping coordinate the next UK MillionsMissing protests (plural) and I'm helping out a bit, but we desperately need more volunteers. Can you organise an event (of any size) at a key location near you? Oxford, Bristol, Cambridge, Belfast, Edinburgh...
  25. olliec

    How to promote Jen Brea's TED talk when it goes up on YouTube?

    MEpedia being a wiki means not only can anyone edit, but it is always in a state of flux and improving, it's never "finished". So for those considering making edits but hesitating, I say BE BOLD. If you are reading a wiki page and see something that is incorrect or could be improved, YOU are...
  26. olliec

    How to promote Jen Brea's TED talk when it goes up on YouTube?

    MEpedia is important alongside the Millions Missing site, to expand and grow pages so those seeing the TED talk can learn more, especially about Jen and the film, but also to springboard into related topics. MEpedia is different to other locations online as anyone can edit pages, so easier to...
  27. olliec

    GMC suspends Nigel Speight

    I'm so frustrated by this news. These poor kids who will lose support because of a professional spat. Hopefully a coordinated response will allow patients to offer support to Dr Speight in some way. I wanted to post and ask if anyone can please help expand the MEpedia page on Dr Speight and his...
  28. olliec

    ME/CFS Alert: Episode 77 - Dr. Derek Enlander

    I think this is an update on an existing (slow?) study? Enlander told me about it at least two years ago, and also mentions it here in 2013 http://phoenixrising.me/archives/16404
  29. olliec

    NIH intramural research program update

    Thanks to everyone who has been collating what we know about all the investigators in the NIH study in MEpedia. If you've seen any especially relevant articles, studies, talks or interviews re investigators (especially those of concern) please add them...
  30. olliec

    NIH intramural research program update

    I don't think I saw anyone post the video yet I added that to the MEpedia page http://me-pedia.org/wiki/NIH_Post-Infectious_ME/CFS_Study