Sunday, March 24, 2013

Jessica's Story - Severe ME

Here is a video of Jessica, a young woman with Severe Myalgic Encephalomyelitis. Jessica has been bedbound for seven years. The video is entitled "Seven Years in the Making", and depicts the realization of her Birthday Wish.

Here is another film on Jessica entitled "The World of One Room". These powerful films highlight Myalgic Encephalomyelitis at its most fundamental core and we must thank Jessica for giving us this extraordinary view into her world. These videos are important.


  1. I look at this woman, who is so obviously suffering from a neurological disorder, and has been technically diagnosed with a neurological disorder, and I wonder how the UK can justify this kind of inhumane treatment. Has she had a spinal tap, an mri, or any other diagnostic evaluation that would suggest something other than palliative care? I ask this as a patient myself, not in the UK, who has benefitted from extensive testing and antivirals and antibiotics. I understand the politics in the UK, but being bedbound for 7 years with a diagnosis that basically seems to mean (in the UK) that you've "thought yourself ill" is reprehensible. Has anyone ever tried contacting Amnesty International or some other international group that could intervene and secure some basic human rights for these patients?

    1. Of course we have.

      People with ME are not stupid or lacking ideas on trying to get help and recognition.

      It should be a Human Rights issue of international note. The UK should be regarded as a pariah country for their treatment of people with ME.

      Amnesty International, other "human rights" organisations have all been contacted in the past. The best thst ever happens is a standard form letter is sent.

      No one cares.

    2. this is saltwatersinger, another person with Severe CFS, I am here, suffering with you all, don't worry, you will get better, miracles will happen,,,, I will pray for us all,, God have mercy on us and our caregivers, keep us strong.
      I will write a poem of hope for us everyday

  2. Thank you for posting this, Patient Advocate. It has been very rare that the public has had a glimpse of the way people with severe M.E. live. I also suffer from severe M.E. and I agree with what Jessica says about it. I am grateful to Jessica for allowing us to see what severe M.E. is really like.


  3. I always wonder if patients who are bedridden have extremely low vitamin D levels, and if they're screened for that, and also for low b12, and even low thiamine levels.

    A thiamine deficiency alone (which could easily occur due to the intravenous feeding which likely has a good deal of glucose?) can cause SEVERE debility of the spinal cord and all body systems, and also greatly increases the susceptibility to infections.

    But being inside, trapped inside, usually with not much light, almost guarantees a severe vitamin D deficiency.

    I wonder what others think about this?

    1. Vitamin D makes me feel worse, I wonder if that is why we are sensitive to light? Anyway people can go from being healthy active people to bedbound in a heartbeat so they would have been getting vitamin D when they are first struck down, so it doesn't explain it for me.

  4. This should be put on the national news channels, maybe there would be more of an outcry. It breaks my heart seeing and hearing about lives being destroyed by this illness. Thanks Chris for keeping the fight going.

  5. It seems very odd to me that if there were any clues to be had, that ME/CFS researchers would perfunctorily dismiss them.

    From the comfort of their armchairs.

    Without so much as the slightest consideration that if a survivor says they might be meaningful, that it just might be so.

  6. "No one cares"

    I have to think about that.
    It "seems" like no one cares, because of the lack of response.

    But maybe it's more than that.

    It's as if people have to put a certain amount of effort into being so utterly unresponsive.

    Like the effort it takes to walk across the other side of the road so as not to have to walk past someone starving on the streets.

  7. I never would have believed how adamantly people would dispute, deny and ignore possible clues that might help themselves.

    Especially if those clues came straight out of the inception of a syndrome.

    It is the exact opposite of what people say they would to if they were offered some information.