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May 2019 - Awareness Week including Millions Missing

Discussion in 'Advocacy Projects and Campaigns' started by Sly Saint, Feb 13, 2019.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) including myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS)
    Sandgate Town Hall will be lit up Blue for International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) including myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS). This light up has been organised by ME CFS Fibromyalgia Support Association QLD. Venue: Sandgate Town Hall, Sandgate. Friday, May 10, 2019.
    International Awareness Day for Chronic Immunological and Neurological Diseases
    Brisbane City Hall will be lit Blue to support International Awareness Day for Chronic Immunological and Neurological Diseases. This Light Up is organised by ME/ CFS/ Fibromyalgia Support Association QLD Inc. Venue: Brisbane City Hall, Brisbane City. Sunday, May 12, 2019 – Monday, May 13, 2019.

    UK:
    ME Awareness Week
    https://www.meassociation.org.uk/get-involved/me-awareness-week/

    (note: this year, like last year, it coincides with Mental Health awareness week in the UK,which in the US is in Oct. So again, it is very unlikely that any events will be picked up in the UK unless a different strategy is adopted or more is made of it being a Global campaign.) @EspeMor
     
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  2. EspeMor

    EspeMor Established Member (Voting Rights)

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    Noted @Sly Saint ! Though if I'm not mistaken Mental Health awareness week is a week before ME awareness week. That does not mean that the press will care about this difference though, so will take that into account!
     
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  3. Andy

    Andy Committee Member & Outreach

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  4. Andy

    Andy Committee Member & Outreach

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  5. Andy

    Andy Committee Member & Outreach

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  6. Andy

    Andy Committee Member & Outreach

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  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Interview with Tina Rodwell starts around 9.30 ends 24.00 (before then music and political stuff); not sure about the accuracy of the 'facts'. Around 17.00 talk about #Millionsmissing, POTS (postural orthostatic tachycardia syndrome), NICE guidelines.

    after that it's all re news/politics generally (he speaks very fast and don't think pwme will find it easy to listen to) then new artists/music.
     
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  8. Andy

    Andy Committee Member & Outreach

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    For the second year(?) running, the supporters of German football team Hertha Berlin have shown their support of pwME.
    ME-CFS1-1200x675.jpg
    German, http://www.gruppa-sued.de/wordpress/?p=2282
    Google translate to English, https://translate.google.co.uk/translate?sl=de&tl=en&u=http://www.gruppa-sued.de/wordpress/?p=2282
     
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  9. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Are they though. I have t seen the main uk charities promote this activism on their social media? Isn’t that a problem? Does #MM have chance to reach maximum potential (numbers matter). if it’s not promoted by all as a collective effort or can they reach enough with supporters generated from previous years? I know theres more planned this year but at a national press level, which to get change we need to reach, will there be enough? I see on MEA fAcebook their chairman questioning why given the suffering there is not more done, but i would argue purely telling stories on awareness week as they do every year and not basically encouraging protest, isn't enough and might be why.
     
  10. Andy

    Andy Committee Member & Outreach

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  11. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    In Germany, the media coverage of ME has hugely improved since the "Deutsche Gesellschaft für ME/CFS" entered the stage. Even though it seems to me the DG generally tend to over-interpret the findings of biomedical research--now the nanoneedle results--, and journalists appear to be happy with their interpretations, this is still much better than what we had before.

    The publication of the Stanford nanoneedle test seems to be a welcome attention-getter for sympathetic media coverage of the ME awareness week.

    1) The weekly magazine Focus' online edition about a young woman with ME:

    Chronisches Fatigue-Syndrom: Es fing mit Halsschmerzen an. Heute ist Karin Münster unheilbar krank
    (Autorin: Janina Schrupp), Focus online, 05.05.2019

    (Chronic Fatigue Syndrome: It started with a sore throat. Today Karin Münster is incurably ill.)

    https://www.focus.de/gesundheit/rat...rin-muenster-unheilbar-krank_id_10665083.html

    Google translation (edit: for some reason the headline isn't translated, but the text body is)
    https://translate.google.com/translate?hl=de&tab=TT&sl=de&tl=en&u=https://www.focus.de/gesundheit/ratgeber/gelenkschmerzen/es-fing-mit-halsschmerzen-an-heute-ist-karin-muenster-unheilbar-krank_id_10665083.html


    2) (no link to the Stanford study) The newspaper Die Welt brought an interview with Prof. Carmen Scheibenbogen, Charité Berlin

    Chronic Fatigue Syndrome: „Sport ist das Schlimmste, was man Patienten empfehlen kann“
    (Sport is the worst thing to recommend to a patient)

    "Müdigkeit, Erschöpfung und Schmerzen sind Anzeichen für das chronische Fatigue-Syndrom. Lange hielt man es für eine psychische Störung - doch es gibt eindeutige Hinweise auf körperliche Auslöser, sagt eine Expertin. Sie macht Betroffenen Hoffnung."

    (Fatigue, exhaustion and pain are signs of chronic fatigue syndrome. For a long time it was thought to be a mental disorder - but there are clear indications of physical triggers, says one expert. She gives hope to those affected.)

    DIE WELT, 30.04.2019, Nr. 100, S. 20 / Ressort: WISSENSCHAFT (by Caroline Ring), https://www.welt.de/gesundheit/plus192685959/Chronic-Fatigue-Syndrom-Eine-Erkrankung-der-Nerven.html

    Paywalled , so just a snippet (deepl translated):

    Translated with www.DeepL.com/Translator

    Edit: I think this is a very good interview for the most part. However, also strange statements are made, for example:

    "Two studies have shown that rituximab can help many patients to recover completely without permanent damage. Recently, a large study was carried out, but unfortunately it was negative. This may have been due to the fact that only half the dose of the drug was administered. We also did a small study with immunoglobulins at the Charité - some of the patients benefited from this as well."

    Translated with www.DeepL.com/Translator

    3) The Free State of Bavaria's public service broadcasting, BR :
    Möglicher Bluttest für Chronisches Fatigue Syndrom, BR24, 06.05.2019, by Yvonne Maier, https://www.br.de/nachrichten/wisse...er-chronisches-fatigue-syndrom-me-cfs,RPgmUEL

    English: Potential blood test for Chronic Fatigue Syndrome, BR24, 06.05.2019, by Yvonne Maier

    (Google translator didn't work, so I will insert a translation in the follwing post).
     
    Last edited: May 14, 2019
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  12. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    The Free State of Bavaria's public service broadcasting, BR :

    Möglicher Bluttest für Chronisches Fatigue Syndrom, BR24, 06.05.2019, by Yvonne Maier, https://www.br.de/nachrichten/wisse...er-chronisches-fatigue-syndrom-me-cfs,RPgmUEL

    Potential blood test for Chronic Fatigue Syndrome ME/CFS
    BR24, 06.05.2019
    , (broadcast 08.05.) by Yvonne Maier (Deepl translated)

    Translated with www.DeepL.com/Translator
     
    Last edited: May 8, 2019
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  13. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Article about Gemma who is part of the Real ME, aiming "to bring an end to people suffering in silence this ME Awareness Week".

    CambridgeshireLive: Cambridge woman reveals the truth about living with a debilitating illness

    "ME remains a hidden disease. There is no known cure and no effective treatment and it can lead to greater functional impairment than multiple sclerosis or cancer.
    “The most severe sufferers are often the most hidden.
    “People find it hard to understand, with the medical advancements, how something like this can happen in this day and age.
    “We desperately need more funding towards research and give people a fighting chance or reclaiming their health.”
     
  14. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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  15. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    The Nottingham article is very good but I don’t agree at all with the MEA stance of keeping detached from and not encouraging direct action by their groaning members. They are, I’m told , going to put something on the wall about #MM today when some events have already happened.

    ME Association chairman Neil Riley said: “To look at these people - men, women, children - and their individual tragedies only further serves to ask the question: 'Why is ME still not being investigated with the urgency it so obviously requires?

    Answer: Partly because there’s not enough direct action and pressure being applied, patients aren’t being mobilised because MEA & AFME don’t want to Lobby or embarrass their collaborative friend the MRC to put up incentivise funding and god knows what AFME are achieving this month, useless. MRC funding since 2015 has been about or less than £1/year / patient, our charities raise on average 30 times less than comparable illness, we should be seeing a massive push on research funds and only one charity is doing it.
     
  16. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I don’t know if the MRC thing is the motivation but I do think what’s missing from the MEAssociation material is a clear up front focus on what needs to happen. You have to get your message over in the headline first sentence and paragraph. Not the last sentence. Not many get that far when they skim through an online article.

    at least a lot of MEAssociation stuff this year doesn’t have the it’s real it’s physical it’s me slogan I hope they drop that completely as it is an own goal. Real people real illness real me is the new slogan

    ETA. I think most of MEAssociation examples I’ve seen so far are women under 40. How about you can have this illness for 40 or 50 years. Or you can get diagnosed when you’re in 50s. It affects everyone.
     
    Last edited: May 8, 2019
  17. Andy

    Andy Committee Member & Outreach

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    https://www.dailyecho.co.uk/news/17...some-to-southampton-to-highlight-me-problems/
     
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  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  19. Andy

    Andy Committee Member & Outreach

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  20. Andy

    Andy Committee Member & Outreach

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    https://www.healthwatchsouthampton.co.uk/news/what-is-millionsmissing/
     
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