1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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August 8th – Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis

Discussion in 'Phoenix Rising Articles' started by Mark, Aug 6, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Firestormm

    Firestormm Guest

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    I can now publicly say thank-you Gabby. It is I think an excellent article for such an important day :)

    Shared far and wide :)
    allyb, SanDiego#1 and Nielk like this.
  3. Purple

    Purple Bundle of purpliness

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    A very powerful article, thank you for writing it. Let's spread the message about how utterly devastating the severest form of ME can be, let's spread the message far and wide. And not just on August 8th.

    If anyone knows of other severe ME awareness raising materials, please post them here - thank you!

    Here is another short awareness video by a person with severe ME:

    allyb and Nielk like this.
  4. Dreambirdie

    Dreambirdie work in progress

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    Thank you Gabby, for taking the time to write this informative and powerful article. :thumbsup:

    The question is how do we get all this info BEYOND our community?
  5. Ember

    Ember Senior Member

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    allyb, SanDiego#1 and Nielk like this.
  6. Simon

    Simon

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    Thanks for a really thoughtful piece, Gabby (moving poem too).

    I too have been severely-affected and know how awful it can be, both the suffering of the illness and the incredible neglect by the medical profession. In any other illness, the most severely-affected patients get the most medical attention, but the reverse is true in ME/CFS. There are no NHS inpatient beds for ME/CFS in the UK at all, which frankly is a scandal. Equally, there is no legal requirement for specialists to visit at home patients who are too sick to travel to hospital for appointments (that might be a clue to the severity of their illness, but often has little impact).

    I have also been lucky in that for some of the time I was severely-affected I had access to respite care. Frankly, in my state this was an ordeal, but even a trip down the road to stay for a week was like a holiday. However, the main benefit was for my carers. This illness takes a terrible toll not only those that are ill, but those that care for them too. Having to care for a severely-affected partner is bad enough, but the fact that your partner can barely even talk to you, let alone go out with you to socialise, adds to their burden.

    While I have had very mixed care in the past, I currently have an outstanding consultant - who made a half-day round trip to see me at home when I was bedbound - and a very good GP. There are some real medical heroes out there.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    My opinion is that if someone was bed ridden and in severe pain, that the minimum treat for an untreatable illness would atleast be Iv fluids to prevent dehydration and iv nutrients as well as appropriate pain relief to ease the patients suffering and allows their body to rest and hopefully improve. Pain relief is just good humane treatment.

    Beyond this should be proper testing and maybe spinal tap to test for the many infections implicated in ME and treat the dam things. But there also has to be an understanding that many cant tolerate usual doses of medicines so treatment needs to be initiated low and slow.

    This in my opion is what should be the minimum standard of care for severe ME. It might not be a cure but it would ease suffering. The carers of these people deserve a gold medal as they do this alone without appropriate medical assistance.

    Griffith university on the gold coast in Queensland Australia are a University teaching hospital and i believe have a ward that is going to be used in a way that research can be done of severe ME patients. This is a great step and would be good if more governments would take this on board.

    cheers!!!
    allyb, Valentijn and Nielk like this.
  8. COACH

    COACH

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    Thank you for sharing this. Thank you also for gathering the resources and links together. I truly appreciate it. And one more thank you for including Karina Hansen. She will have been away from her home for 6 months on August 12th. I hope she can get the help and treatment she deserves. I wish this for all ME patients.
    Nielk likes this.
  9. Mark

    Mark Acting CEO

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    For those who use Twitter, the hashtag #severeME has been suggested, there are some tweets with that tag already and you could tweet again on Aug 8th - perhaps tweet some of the videos.
  10. Purple

    Purple Bundle of purpliness

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    It is a good idea to tweet videos. Here is the latest video by Jessica called 'Out of the World of One Room' showing how difficult it it is for her (and others like her) to leave her room.

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  11. Kina

    Kina Moderation Team Lead

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    Thank you Nielk for the very thoughtful and moving article. :hug:
    allyb and Nielk like this.
  12. Nielk

    Nielk

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    Thank you Firestormm. This would not have been possible without all your help.:thumbsup:
    allyb and Firestormm like this.
  13. Nielk

    Nielk

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    Thank you.
    Yes, the idea is to share as much as possible.
    allyb likes this.
  14. Nielk

    Nielk

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    Thank you Dreambirdie - That's a good question. Any ideas?
    allyb likes this.
  15. Nielk

    Nielk

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    Thank you Simon

    That is such a good pint that in any other illness, the most severely affected patients get the most medical attention. This is a barrier that somehow needs to be broken. It almost seems like a taboo subject to talk about these very severe patients yet, they are the ones that need the most attention!
    allyb, Simon and Valentijn like this.
  16. Nielk

    Nielk

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    That's great that Griffith University Hospital has a ward for severe ME patients. Like you stated, I hope that other countries will do the same.
    allyb likes this.
  17. Nielk

    Nielk

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    Thank you.

    I wish that there was a way for mass media to pick up on this story of abuse with Karina. The world needs to know about the crime that is being perpetrated!
    allyb and Valentijn like this.
  18. Nielk

    Nielk

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    Thank you! :hug::balloons::hug:
    allyb likes this.
  19. Dreambirdie

    Dreambirdie work in progress

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    I agree with you that getting Karina's story out into media would be really helpful. But HOW?
    allyb likes this.
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    At this stage i think its only for research purposes but hopefully it can move on to more of a treatment for these people??
    allyb, Firestormm and Nielk like this.

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