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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. I

    BMJ b/s painting PWME as threatening psych patients

    I agree with your observations Suzy. Precisely, because to do otherwise, might well constitute assault, battery and a violation of human rights under international law.
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    BMJ b/s painting PWME as threatening psych patients

    "....lack of compliance with recommended treatments''.....Hmmm I wonder why that is? Could it be that: (a) it does not work, works poorly or works for very few patients? (b) has an inherent risk that outweights any benefit? (c) is dangerous? (d) one or more of the above? :Retro...
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    BMJ b/s painting PWME as threatening psych patients

    A generalized characture of the community. Three words to advocates: never give up, never give up, never give up. :thumbs up:
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    XMRV and CFS - the sad end of a story

    Oh you mean like Coffin did at the SoK conference - talking about his positional view on XMRV before his research was published? Or perhaps the hundreds of thousands of scientists that do that regularly by way of poster presentations and talks at conferences.....who's works are in the process of...
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    XMRV and CFS - the sad end of a story

    Makes a lot of unfounded statements....that other scientists do not.... I guess all those long reaching statements by a few key authors of negative studies, made to the press and circulated across the globe, which were not consistent with the findings in their own research papers where not...
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    for the ladies; symptoms vary with cycle?

    MP Changes occur in ME MP changes after contracting ME are not uncommon. This paper http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1753720/pdf/calwestmed00378-0019.pdf was a study on this very issue in women who were amongst those who came down with the first outbreak of ME in 1934 in LA, USA...
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    Article: Coalition4ME/CFS Puts Out Call For Action on DSM-5 Proposal

    Neilk You might find these articles of interest http://www.cchrint.org/tag/dsm-5/page/2/ /http://www.cchrint.org/cchr-issues/dsm-billing-bible/ And an interesting short video " The DSM Inventing Mental Illness"http://www.cchrint.org/videos/disorders/dsm/
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    How do you help a spouse understand that symptoms are really "that bad"?

    Hi me2 Sorry to hear this.....but it is not an uncommon story, sadly. Tell him 1. Your body is broken. It's not that you won't get up, its that you cannot This video might help http://m.youtube.com/index?desktop_uri=%2F&gl=AU#/watch?v=r0w9-eQ_fKQ 2. Alternatively....tell him you are...
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    ME outbreaks in the Swiss Army in the 1930s

    Hi Eric The following might be of interest to you As this forms part of what is referred to as historical ME......there is a lot more general information on the subject in this thread Also a wiki on this topic has also been started in the forum which is collecting historical literature on...
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    Article: Coalition4ME/CFS Puts Out Call For Action on DSM-5 Proposal

    Neilk, great news! Thanks Dr John. Thanks Suzy for all the information and reference material.....great work! Absolutely......which is why all persons, iLL or not, should be very concerned about the extent of what is being proposed. What astounds me is that this group seems to have trotted...
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    Article: Coalition4ME/CFS Puts Out Call For Action on DSM-5 Proposal

    Hi Andrew You are correct. Psych sees syndromes as functional somatic syndrome disorders. That is, there is a group of syptoms that cannot be explained by medicine (medically unexplained symptoms MUS) and of course psychiatry believse that all these symptoms are somatic (of the body and are...
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    Article: Coalition4ME/CFS Puts Out Call For Action on DSM-5 Proposal

    Hi Andrew You are right. At the moment, they do not intend to do that. It operates in respect of all organic illnesses as well. So in addition to your existing diagnosis be it CFS or cancer for example, they can give you this additional one as well. It will attach to or bolt on, to your...
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    DSM IV proposed reforms for DSM 5: URGENT: Submissions needed NOW. Help is here!

    TO REGISTER Go to www.dsm5.org This page http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=368# takes you directly to information on the SSD. CSSD criteria and at the foot of the page you will see the following link to help you register and to upload a submission...
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    Article: Coalition4ME/CFS Puts Out Call For Action on DSM-5 Proposal

    Very interesting Suzy. Great work there by Williams and Hooper. Someone should tell people like Shepard that its 2011 and that with advances in media and associated technology that it is acknowledged we live in a global village. That attitude is pre historic....and those in positions of...
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    DSM IV proposed reforms for DSM 5: URGENT: Submissions needed NOW. Help is here!

    Criticisms from ACA- taken from the article cited by Suzy
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    Article: Coalition4ME/CFS Puts Out Call For Action on DSM-5 Proposal

    Suzy The site was down for 8 hrs that I know of. See the time stamps on my post to glenp (#39) then subsequent one to you reporting it was still down
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    Article: Coalition4ME/CFS Puts Out Call For Action on DSM-5 Proposal

    Hi Suzy That would be great. I checked just a moment ago and the site is still down.
  18. I

    Has the scientific process had a fair chance to work itself out with HGRV's?

    Thanks Francelle....
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    DSM IV proposed reforms for DSM 5: URGENT: Submissions needed NOW. Help is here!

    You need to register and submit online. TO REGISTER Go to www.dsm5.org This page http://www.dsm5.org/ProposedRevision....aspx?rid=368# takes you directly to information on the SSD, CSSD criteria and at the foot of the page you will see the following link to help you register and to upload a...
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    Article: Coalition4ME/CFS Puts Out Call For Action on DSM-5 Proposal

    Hi glenp I just tried to access the site and it is down. So may be try again a little later?
  21. I

    Prof Stephen Holgate on CFS: 'we need a fresh view"

    Actually I would like to see more comments like this from Simon. It gives a greater insight into his character. He is digging himself a very big political hole with that sort of material. As for the miniscule funding..........how much was allocated to the ridiculous Pace Trial? What...
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    Article: Coalition4ME/CFS Puts Out Call For Action on DSM-5 Proposal

    :Retro frown: Hi laura Your contribution would be awesome! You are right. People do not seem to be aware of the ramifications (asleep), in denial (XMRV is going to save the day - yet the reforms apply to all illnesses as a bolt on diagnosis) or simply dont care:Retro frown: It...
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    Has the scientific process had a fair chance to work itself out with HGRV's?

    . I agree and support efforts like this one and helping assist fund private research. It is hard to sit on the sidelines and watch this play out, and contributing to assist WPI and other private research takes away from the feeling of helplessness. However, the WPIs wont be able to survive...
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    Another Contest Vivant - to WIN Reseach Money!!

    For all of you working so hard on this competition,:thumbs up: could I ask you to spend a little time putting together a short submission to the APA on the DSM 5 proposed psychiatric diagnostic reforms. If they go through - its not going to be a happy state of affairs for persons with ME CFS...
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    Article: Coalition4ME/CFS Puts Out Call For Action on DSM-5 Proposal

    Hi Andrew It has been a very busy 12 month for the orgs That is why it does not hurt to do what you did and drop them an email,and send them on some information they might not have. We need to flag the coming APA DSM deadline with them and encourage them to make fresh submissions. I...
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    DSM IV proposed reforms for DSM 5: URGENT: Submissions needed NOW. Help is here!

    Here is a list of concerns regarding the proposed changes to DSM 5 and CSSD which you might find useful when putting together your own submission. GENERAL CRITICISMS of DSM 5: SSD and CSSD PROPOSED REFORMS and as they related to persons with ME CFS FMS 1. Extensive medical...
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    DSM IV proposed reforms for DSM 5: URGENT: Submissions needed NOW. Help is here!

    The following is for anyone that has come in late to this subject. DSM 5 - OVERVIEW: WHAT IS IT & WHATS IT ALL ABOUT 1. What is the DSM 5 and who is responsible for its modifications? The APA is responsible for publishing the diagnostic manual on psychiatric illnesses. This is...
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    DSM IV proposed reforms for DSM 5: URGENT: Submissions needed NOW. Help is here!

    Your help is needed NOW! AN URGENT CALL TO ACTION CALLING ALL SCRIBES and ADVOCATES Put aside: XMRV, WPI Fund Raising, Science invites to retract papers, Pace Trial Concerns for a day or two. YOUR HELP IS NEEDED HERE and NOW:Sign Help: The American...
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    Article: Coalition4ME/CFS Puts Out Call For Action on DSM-5 Proposal

    For anyone who wishes to put in a submission, but has come late to the topic - I have done an over view to help people come up to speed here: http://forums.phoenixrising.me/showthread.php?1893-the-psych-lobby-strikes-again-DSM-5-v.-WHO-s-ICD-in-the-US&p=184277&viewfull=1#post184277 And...
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    the psych lobby strikes again: DSM-5 v. WHO's ICD in the US

    Here is a list of concerns regarding the proposed changes to DSM 5 and CSSD which you might find useful when putting together your own submission. GENERAL CRITICISMS AGAINST DSM 5 SSD and CSSD PROPOSED REFORMS and as they related to persons with ME CFS FMS 1. Extensive medical...