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Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

Discussion in 'General ME/CFS News' started by Firestormm, Jul 31, 2014.

  1. Firestormm

    Firestormm Guest

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    Daily Mail includes lots of photographs and a video made by Jessica.

    Same story appears online in Daily Express with added detail: Reproduced here by the ME Association: http://www.meassociation.org.uk/201...struck-down-by-me-daily-express-31-july-2014/

    Great to see some major reporting. Of course we heard of Jessica's success earlier (last month I think?).

    For anyone who hasn't been following Jessica's struggles (Facebook: World of One Room) it has been a very long and hard fight and it isn't over by any means.

    Jessica is also to be featured in the upcoming Canary in a Coal Mine documentary by Jen Brea and her team.
     
    Last edited: Jul 31, 2014
  2. Ambrosia_angel

    Ambrosia_angel Senior Member

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    I just came across this on the daily mail. It's made my week. We need more stories like this! So inspiring.
     
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  3. Firestormm

    Firestormm Guest

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    I totally agree :)
     
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  4. A.B.

    A.B. Senior Member

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    That is great to hear. Is there some information about the virus, and treatments that she did?
     
    Last edited: Jul 31, 2014
  5. Firestormm

    Firestormm Guest

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    No. And I wasn't sure about 'deadly virus' either. Can't recall what she had picked up that started all of this but 'deadly virus'??? Could be I suppose but nothing I have seen made me take note and I think I would have done. I have been following Jess for quite some time.

    A remarkable young lady indeed. And a great credit to our community - not because she has been finally able to walk - she was before and remains so in my opinion. A terrific advocate :)
     
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  6. TigerLilea

    TigerLilea Senior Member

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    I'd like to know what the treatment was that she received. My alarm bells go off when I read stories like these because this is so NOT the CFS/ME that I have. Why would any parent let a young child languish in bed for so many years? And why is it that these types of stories tend to always come out of the UK???
     
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  7. Gingergrrl

    Gingergrrl Community Support Volunteer

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    This was my question, too, and if anyone knows which viruses she had or what treatments she did, I would love the info.
     
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  8. Cheesus

    Cheesus Senior Member

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    I often read about other people's experience with ME and just think 'that is not what I have'. In all honesty, it probably isn't. We'll no doubt find out more in the next few years.

    For the time being though I am really pleased to hear she is improving :) Absolutely fantastic news. I hope she goes from strenght to strength.
     
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  9. Cheesus

    Cheesus Senior Member

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    Very well said.
     
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  10. Daffodil

    Daffodil Senior Member

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    why do you think this is not the same CFS that you have? it affects everyone differently
     
  11. Cheesus

    Cheesus Senior Member

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    It could be. I just think the heterogeneity of symptom presentation with CFS/ME means that there is likely a number of subcategories of the illness. I feel I have a lot more in common with some people's experiences than others.

    You might be entirely right, though. We could have the exact same thing going on, but for whatever reason it manifests in different ways. I am sure we will find out soon.

    ETA: And in the meantime, I am really pleased we have people like Jess who are championing our collective cause!!
     
  12. barbc56

    barbc56 Senior Member

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    @Daffodil

    I have the same question.

    Keep in mind phsiotherapy is not GET.
     
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    What alternatives are there? Forcing her to get up and exercise?

    I too would like to know if she had any specific treatment. Or could it just be that the bedrest allowed her body to recover?
     
    Last edited: Jul 31, 2014
  14. Min

    Min Guest

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    Her inspiring story is here too, I undetstand she is home and hope she continues to improve.

    http://www.express.co.uk/news/uk/494068/ME-woman-walk-for-first-time-in-nine-years

    It is not her parents who left her 'languishing' in bed for 9 years, but the UK's health service that offers bedbound sufferers absolutely nothing, and would have been content to leave her there for decades, because White etc insist that myalgic encephalomyelitis is a somatoform disorder. It is shameful, given the amount taxpayers pay into the national health service, that the only help she could get was paying privately.
     
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  15. Firestormm

    Firestormm Guest

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    I think it's a fair point and does seem to be the exception rather than the rule. I spent many months in bed when acutely ill - back and forth to hospital at times - but was never in the same situation as Jess. Never that bad. I could always manage to shuffle to the toilet on my own steam.

    And it wasn't her parents keeping her there. She has I believe been in touch with health professionals every step of the way. There is nothing to suggest otherwise. I have been following her Facebook page and Charity progress for ages.

    The extracts above describe where she was when she started to walk:

    But Jess had stayed there several times (if not many times) before I believe. It has been a very long journey for her. Until we try and better understand the extent to which very severe patients are disabled, and the prevalence of such numbers: we don't really know very much about this end of the spectrum.
     
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  16. Cheesus

    Cheesus Senior Member

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    I actually find my NHS physio to be very helpful. I speak to her on the phone once a month and we talk in detail about my activity management and how I can reconcile pacing with managing to gently push at my physical boundaries. I don't feel I would have seen the improvement that I have without her help. We balanced my boom and bust and we've sorted out my sleep. Just having someone to regularly touch bases with and get feedback from who has seen a wide diversity of patients has been very valuable.

    I'm not sure what services there are in other parts of the UK, though.
     
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  17. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Firestormm Would a patient like Jessica who was in a special hospital for ME ever receive testing for things such as EBV & herpes viruses, Lyme disease, etc, or would this never occur in the UK? I understand the NHS will not do it but can someone choose to pay privately for those tests if they are able or are they forbidden?
     
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  18. Daffodil

    Daffodil Senior Member

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    what we have is autoimmune. no amount of antivirals or antibiotics or anything we pump into our system is going to make us recover until they address the autoimmune nature. our immune system will remain weak and we will just keep getting infections.
     
  19. Sasha

    Sasha Fine, thank you

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    I don't think we know that. I'd agree it looks on the cards for at least some of us, but others may have an active infection.
     
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  20. Mij

    Mij Senior Member

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    I don't think ME is any different than other debilitating illnesses. There are different severities, some with MS can go into remission while others are in a wheel chair. I'm thinking genetics plays a bigger role?

    It is interesting though that most of these news stories come out of the UK.
     
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