The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Giving M.E. A Place In The World: A HuffPost blog by Sonya Chowdhury

Discussion in 'General ME/CFS News' started by AndyPR, Jul 7, 2017.

  1. AndyPR

    AndyPR Tired Sam ate all the cookies!

    http://www.huffingtonpost.co.uk/sonya-chowdhury/giving-me-a-place-in-the-_b_17382960.html
     
  2. TiredSam

    TiredSam The wise nematode hibernates

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    Well that shut us all up :wide-eyed:

    Where's the nonplussed emoji?
     
  3. NelliePledge

    NelliePledge plodder

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    this was at the bottom of the blog

    HuffPost UK Lifestyle has launched EveryBody, a new section calling for better equality and inclusivity for people living with disability and invisible illness. The aim is to empower those whose voices are not always heard and redefine attitudes to identity, lifestyle and ability in 2017. We’ll be covering all manner of lifestyle topics - from health and fitness to dating, sex and relationships.

    We’d love to hear your stories. To blog for the section, please email ukblogteam@huffingtonpost.com with the subject line ‘EveryBody’. To flag any issues that are close to your heart, please email natasha.hinde@huffingtonpost.com, again with the subject line ‘EveryBody’.

    Join in the conversation with #HPEveryBody on Twitter and Instagram.
     
  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    Such a good article how does she justify putting afme's name with it.

    Would like to be privy to the internal drama on that one.

    AfME can have lots of good info for pwme but while attached to Crawley it's a toxic waste.
     
    Binkie4 and Countrygirl like this.
  5. Dolphin

    Dolphin Senior Member

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    For some reason I thought her son was better than this:
     
    Valentijn likes this.
  6. Sean

    Sean Senior Member

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    I wonder where they got that idea from?
     
    Valentijn, Manganus, Binkie4 and 4 others like this.
  7. Kina

    Kina Admin Support Staff

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    I don't know how Sonya Chowdhury can say that when they restrict conversations about ME research in their own forum.

    How is this kind of restriction making ME more visible and I would suggest it is totally disrespectful to people with ME to suggest that threads about research 'clutter' up the forum. It would cause more distress to have to hunt through one thread to find specific research. Talking and discussing pertinent research with peers is an important part of peer support.

    What a load of shite.

    I think the HuffPo article should be amended to:

     
    Last edited: Jul 8, 2017
  8. A.B.

    A.B. Senior Member

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    Did she say that her son had recovered?
     
  9. Kina

    Kina Admin Support Staff

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    From her other HuffPo article:

     
    Valentijn likes this.
  10. slysaint

    slysaint Senior Member

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    Time for me to come clean I guess.......

    This was partly down to me posting links to research and petitions etc.............26 of my 41 posts were deleted without warning and when I protested I was thrown off AfMEs forum.:

    This was my post:
    "
    Joe, I am sorry if I offended you. The comment was not personal. I did understand you were setting up the research thread, but had not realised that you intended to delete all previous research/news/petitions threads in the process.

    I was a fully paid up member of Action for ME for the first 7 years or so of being ill and am fully aware of the need for a support forum.

    I have always tried to post on a separate thread so that people could avoid it if they were not interested and am a little bewildered at the claim that these and a couple of others peoples posts were 'clogging up' the forum. But have nevertheless tried to abide by your decision as moderator.

    But I think you need to clarify if any discussion about, treatments, what people have tried, why they have tried it (ie based on videos on Youtube, research/articles they have read) is also not allowed. (when I first joined this forum this did not appear to be the case)."

    He did not reply to this on the forum. Shortly afterwards I received this:


    "
    Hello Slysaint,

    My name is Joe and I am the forum moderator of M.E. Friends Online, Action for M.E.’s online forum dedicated to peer support and friendship. I am contacting you today to inform you that your access to M.E. Friends Online has been revoked. I will now explain why this decision has been made.

    It has come to our attention that you have been sending unsolicited messages to our newly registered users who have joined M.E. Friends Online to seek support and friendship. These messages attempt to divert the users away from M.E. Friends Online to a different online forum. This is not in keeping with the spirit of keeping M.E. Friends Online a welcoming, supportive and caring place to be.

    We have also been concerned to see that you publically posted a defamatory comment about the forum moderator comparing them to “North Korea” on March 24 despite the forum’s community guidelines stating: “Please respect the moderator - their job is to keep the forum safe and constructive so that everybody gets to have their say. Personal attacks or defamatory comments aimed at the moderator are not acceptable.”

    We have also noticed that you have failed to engage with M.E. Friends Online in a manner that fits with the forum’s ethos of providing peer support and friendship. Your posts have been almost entirely focused on M.E. research and M.E. politics and have often been challenging in nature. As I know you are aware, there are other forums on the internet dedicated to the discussion of these issues.

    We are sorry that we have had to take this action. However, since multiple breaches of our community guidelines and unsolicited messages to potentially vulnerable forum users have been recorded, we feel that it is no longer in the best interests of our forum users for you to continue accessing M.E. Friends Online.

    Best regards,

    Joe Martin

    Action for M.E.
    Communications Officer (Online Communities)

    Tel: 0117 937 6621"

    The 'unsolicited messages' were PMs I sent to people who were enquiring about specific treatments and suggesting they look on PR, and later when people started joining the new Parents and Carers forum I was simply informing them (not telling them anything else) that a new 'Parents and Carers' forum was also being set up on PR and that they might find it of interest.

    But they(AfME) knew who I was from the outset; I even used the same name as I do here.

    What they clearly didn't like was that other members were actually beginning to question things, which is why they shut it down and created the 'research thread', which has little/no discussion and presumably Joe is also able to delete any posts he doesn't like or that are not 'in keeping' with the AfME ethos.
     
    Last edited: Jul 8, 2017
  11. boolybooly

    boolybooly

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    A4ME has always tried to be collaborative but all that got us was PACE.

    This is an adversarial situation, we have to defeat the opposing team and we need the world to see it. For that we need hard and truthful science.

    The CMRC is something akin to a rugby scrummage with both sides getting up close and personal in the scrabble to acquire research funding.

    I think the logic is something like... by "collaborating" we can attract more money... then we fight to divvy it up. What is the betting A4ME end up with the short end of the stick once again?
     
  12. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

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    Well deleting comments and hiding the truth is how propaganda works ......luckily they don't rule the world....that's just their delusion.

    My take on this: SC clearly is a "quid pro quo" type of person who doesn't like conflict and so by nature is inward looking. As such she is easily manipulated by the more controlling BPS crew and she will do as she is told to get a few crumbs from the table.

    She is definitely not about looking after the care of members as her number one priority as a result.

    It doesn't matter how many slushy articles she writes or interviews she attends .....the truth will eventually come to light that she was assistant propagandist to a devisive and manipulative power hungry group of individuals who are inept at their jobs and have a wayward moral compass.

    I agree the only way to fight this is to turn this around on them and broadcast to anyone that will listen how mad this situation really is. We all need to become advocates in this respect.
     
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  13. Cinders66

    Cinders66 Senior Member

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    Action for ME are full of on surface seemingly tough speaking articles and reports but in reality call for very little to actually change except more "awareness", understanding and benefits etc. They often use phrases like more research is desperately needed yet despite lots of well paid staff AFME have failed to attract it and refuse to demand more of state founders. For what SC is paid I think she should have achieved more.

    I agree with boolybooly that collaboration can actually be seen as cowing down to the establishments way and it hadn't gotten us far.
     
  14. Barry53

    Barry53 Senior Member

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    Candy floss advocacy - all fluff and no substance.
     
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  15. NelliePledge

    NelliePledge plodder

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    sorry for replying to myself :confused:
    is there anyone who would be able/willing to do a blog on HuffPostUK would be an opportunity to put a different perspective and include different signposting. Im new to ME my story wouldnt be interesting enough but if anyone who has had ME for years and able to tell a story around GET impacting their health, or other poor treatment by current NHS approach I would be prepared to work with you to write up the blog if you dont have energy for that
     
  16. boolybooly

    boolybooly

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    I agree @Cinders66 , IMHO the widespread problems with recognising ME all began in US court rooms with legal battles over health insurance.

    Its like tobacco companies working to oppose research on cancer.

    The biopsychosocial model began IMHO as legal sophistry intended to bamboozle judges. In the legal context BPS proponents say whatever they can get away with.

    They are incorrigible because the motive for their incorrigibility still exists.

    BPS legitimises projection and victim blaming as a means to evade the cost of support and for the record as we all know that is no longer just insurance companies but includes our own governments.

    The BPS team are driven by the profit in winning legal battles and that is the context in which we have to defeat them.

    On that basis I feel representative organisations should not be collaborating with BPS proponents because it legitimises their blag, which has and deserves no legitimacy and was never as sincere as it pretends to be.
     
    Last edited: Jul 8, 2017
  17. Snowdrop

    Snowdrop Rebel without a biscuit

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    Given the above posts I'd like to share an excellent link to a thread started by AndyPR on how to be effective at advocacy:

    http://forums.phoenixrising.me/inde...ge-happen-for-human-rights.52693/#post-872566

    I listened and found it full of really helpful information on how best to be an effective advocate.

    AfME needs to be exposed. Their main source of legitimacy now comes from new and unsuspecting recruits.

    They pay to have google display their site so it's a person's first point of contact when searching.

    To me this article was a well crafted piece of advertising.
     
    Last edited: Jul 9, 2017
  18. slysaint

    slysaint Senior Member

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    Just to add that on the AfME forum there had been no objection to people (one in particular) posting links to some quacks Youtube vids or anything that supported the CBT/GET agenda. They really didn't like it when I said that AfME were funding Crawley (one of my 'challenging' posts) and took great exception to a thread about AfME funding Peter White, which the moderator deemed 'misleading' even tho the information is there on their website.

    The members largely did not appear to know who these people were (to be honest neither did I not that long ago) but clearly Joe/AfME did; so why did they not want it pointed out to their members?

    Carpets and sweeping under comes to mind.
     
  19. Kina

    Kina Admin Support Staff

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    Joe Martin forum moderator -- fingers in many pies.

    Campaigning for better disability support and more awareness of neurological illness. -- somebody might want to point out to Joe that not allowing research and advocacy threads to 'clutter' their forums is NOT reaching this goal.
     
    MEMum, BurnA, Invisible Woman and 6 others like this.
  20. Dolphin

    Dolphin Senior Member

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    Action for ME ran a 1% campaign in the early to mid 2000s calling for £35 million to be spent per year on research, 1% of the cost of ME to the country. They had 200 people at a protest on a bridge. This was their 2nd attempt: they didn't get enough people they felt for their 1st protest. There was also postcards that you were to send to your MP and others and I think a media campaign .

    It was all pie in the sky. Outside the US, lobbying generally has little effect on what illnesses get in the research budget as far as I can see. The MRC is kept separate and independent from politicians.
     
    Valentijn, Cinders66, Sean and 2 others like this.

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