Voices From The Shadows. Award winning documentary regarding M.E 30 minute version free to watch.

jackie005
jackie005 Online Community Member Posts: 25 Contributor
in Everyday life
 Just been sent this from 'Voices From The Shadows', if you missed the full version of this award winning documentary on CFS/M.E., this 30 minute version is free to watch at the moment, no codes needed.. Hope the link works..  http://voicesfromtheshadowsfilm.co.uk/?fbclid=IwAR0QKTYKEf6RuFbYD33tGYicKaAlN-FNRWlV7uMTblg0I8irpmnhbQxthz0

Comments

  • Hartley
    Hartley Posts: 114 Contributor
    I get confused with the titles..

    I was officially diagnoses 2011 Dr Ellis...Very good Specialist..
    Fibromyalgia/ cfs   He said i was right down the middle for both aspects,at that time and to this day they seem to be working in equal measure....My spine is degenerative from c5/c6 stenosis permanently pressing onto the spinal cord and ostedodiscal bars Indenting the  thecal anteriorly and abutting the cord,And a t 11 haemangioma (benign tumour)

    I mention all of the above as my question is...Isnt M.E specific to the spine?...
  • jackie005
    jackie005 Online Community Member Posts: 25 Contributor
    Hi @Hartley, spinal, neck issues and so much more do seem common with M.E/CFS. Are you a member of the Facebook M.E. Awareness site. Lots of good info and support. Hoping it's OK to post the link here...https://www.facebook.com/groups/2379871070/

  • Hartley
    Hartley Posts: 114 Contributor
    I'm only 1/3 of the way into this wonderful documentary!

    Ive actually spoken for a nurse ,who nurses at the Whillington Hospital London...Some of the things she said was horrifying..
    Her general attitude towards the sick in general..but her disdain and disbelief towards Fibro/cfs-M.E

    I am totally happy to fully disclose that 'many'(and this isnt based solely on this nurse i spoke to)have a **** conscious loathing and disdain towards the sick and ill....They see mankind on a daily bases in their worst states...whimpering,crying..in pain!

    Worked to close exhaustion,long hours...red tape ,protocols...old equipment..Its not long before they detach...
    There some amazing Drs' nurses....and its hard to give a % that are quite vile in their approach..

    These people are just that.People..!

    And people can be the worst kind of experience you'll ever meet.

    Yet its a beautiful thing to meet even 1 Dr , that leans forward and speaks softly and explains the work loads he/she is under and they understand you, but their hands are tied with red tape and have to choose the cheapest medicines and you know these people are a quiet whistle blower(oxymoron i know) yet even meeting one of these Drs/Nurses that does this is a light amongst the pitch blackness that can be the nhs. Im merely talking about MY experience..but talk to enough people and pass the ones that have had success...And youll realise what a lottery it all is...and its a flawed system and many have gone to their graves due to this system.


  • jackie005
    jackie005 Online Community Member Posts: 25 Contributor
    @Hartley I know, I know from bitter experience. My lad has been ill since 2008 eventually diagnosed CFS. M.E. Chronic Pain Syndrome late 2010 spent majority of 4 years in bed chronically ill. Horrendous symptoms, no investigation, everything put down to 'just.another symptom of M.E'. Last year had his bloods privately tested Germany he's positive for both Lyme disease and co-infection of Bartonella. NHS Lyme test came back clear so NHS Doctor  will not treat or investigate and we don't have the income to go private. In the meantime his health continues to deteriorate. 
  • Hartley
    Hartley Posts: 114 Contributor
    @jackie005
    Wow!...So theres tangible evidence( other than the very OBVIOUS evidence your lad is ill right !?)
    Did the medical professional ignore the blood tests?

    I'm presently attending St Thomas' Hospital pain management clinic gassiot house london...Its right next door,across the road from the London eye!
    My second app( quantitative sensory test)is 31st July...

    Its a ways to get there...but this coming app,ive arranged a lift through the hospital..Cannot do the distance,walking and underground..

    If you can...try and have your son referred to here..

    Im not advocating as such..but it appears to be the pinacle for all things pain...So ms,m.e,fibro.cfs etc....


  • jackie005
    jackie005 Online Community Member Posts: 25 Contributor
     @Hartley All our GP's refuse to refer him to a Neurologist or Specialist, says it all an 'anger management issue' He had to go down the mental health route and now they are saying not mental health anger issue. Beggars belief. 
  • Hartley
    Hartley Posts: 114 Contributor
    @jackie005

    It does indeed!
  • Adrian_Scope
    Adrian_Scope Posts: 11,783 Online Community Programme Lead
    Thank you for sharing the video @jackie005. I'm sure lots of people will find it really interesting.

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