It just would not be so...

My life

Is a living torment
I wish it were not so
I wish I could say
That everything I had tried to do to get well had helped me
But it would not be true
I wish I could say
That every one who tried to help me had done so
But it would not be true
I wish I could say that everyone I trusted had been worthy of it
But it would not be so
I wish I could say I had not been betrayed
But it would not be so
I wish I could say I had not been let down
But it would not be so
I wish I could say I had not been mistreated
But it would not be so
I wish I could say I had not been misrepresented
But it would not be so
I wish I could say I had not been ignored
But it would not be so
I wish I could say that I feel safe
But it would not be so 
I wish I could say that all the myriad things we have done to raise genuine awareness of ME had been effective
But it would not be so
I wish I could say that there is a safe medical pathway for my illness
But it would not be so
I wish, how I wish, that I could say that people understand the difference between ME and CFS
But it would not be so.
I wish I could say there is reliable diagnosis
But it would not be so
And I really wishI could say that there is a cohesive representation of my illness 
But it just would no longer be so
I wish I could say with certainty that everyone with a diagnosis of ME actually has it
But the truth is that it is so misdiagnosed, misrepresented, misunderstood
That it horrifyingly, sadly, unacceptably would just not be so.
I wish I could say that I had been adequately investigated
But it would still, twenty years on, not be so
I wish I could say I have adequate medical support
But it would not be so
I wish I could say that research purporting to be fir ME is definitely looking at my illness
But it just would not be so
I wish I could say there is hope for the future
But it just would not be so
I wish I could say I have confidence in the charities supposed to be representing ME
But it just would not be so
I wish I could say the government is doing all it can to ensure accurate diagnosis and to provide a biomedical treatment pathway for ME
But it just would not be so
I wish I could say that the most severely ill people with ME are treated with medical respect and are at the forefront of medical research
But it just is not so.

Shocking isn't it?
Or is it?


 

Comments

  1. Linda, I wish I could say that I could give you some kind of strength or comfort or hope for the future. I do personally have hope for the future although I think we're still probably a good 20 years away from medical and scientific acceptance of ME. My hope is that future generations will not have to suffer so terribly.

    I was wondering about your saying you haven't been properly investigated. In "Voices From the Shadows" I believe Greg said you were diagnosed by the late Dr. Betty Dowsett and I can't imagine anyone more knowledgeable. Did you mean you haven't been properly medically investigated since or does that refer to social services perhaps?

    I'm sorry for bothering you with questions and please don't feel you need to answer. I thought I'd ask because it is important to correctly understand you and what you've been through and are going through.

    -Jan

    ReplyDelete
  2. Thanks so much Jan. Linda, unfortunately, has experienced years of mistreatment, misunderstanding and denial of her most severe symptoms such as paralysis. Our experience has taught us how little professionals are aware of Severe ME. We trusted people we thought could help only for Linda to suffer great harm as a consequence. Linda has deteriorated massively since Voices, to the extent that her daily life is sheer, frightening torture. How is anyone like Linda to access tests and treatments when they are so excluded on every level from the system ? Surely it is the most ill who are most representative of the disease, but no one is investigating them. As far as Linda is concerned unless you research paralysis you are not studying ME. The only option open to the most ill, is to pay privately, but even then the potential for harm cannot be overstated.

    ReplyDelete
  3. I understand now, thank you so very much Greg for taking the time to explain so thoroughly. My paralysis was also denied by doctors, however I am fortunate enough to not have experienced that symptom in a number of years, although my ME is still severe.

    I remember reading in the Canadian definition about the disagreement regarding including paralysis and the decision was made to leave it out as there weren't enough patients (in the experience of the authors) with that symptom to include it. And of course there are not when severe/very severe ME patients are rarely seen by these doctors.

    I'm sorry beyond words for Linda's suffering and complete lack of appropriate care. I do believe we will have our day, one day, though and you and Linda will be remembered for the important work you did.

    -Jan

    ReplyDelete
  4. Jan, that is extremely interesting about the decision to leave paralysis out of the Canadian definition - we didn't know that ! Linda, who is gutted, says it is a travesty ! Paralysis forms a major part of her ME, however she was not sure anyone else experienced it, until we conducted our own Stonebird study - and were amazed. The results were shockingly familiar. paralysis is much more widespread than we imagined. It has made Linda even more incenesed it is medically ignored and not even included as a symptom, when it is a profound symptom. The survey is just so moving - all these people with paralysis (others have come forward since the survey), receiving no treatment or recognition. It has made us determined to raise awareness of paralysis as fundamental in ME .http://www.stonebird.co.uk/Paralysis%20Study.pdf

    ReplyDelete
  5. http://www.name-us.org/DefintionsPages/DefinitionsArticles/ConsensusDocumentFull.pdf
    From page 10. "They found that the Holmes definition...and the addition of ten other symptoms...strengthen the ability to select ME/CFS patients. Based on this study, we added exertional dyspnea and muscle fasciculations to our clinical definition. All the symptoms which the De Becker et al. study (45) recommended adding to strengthen the ability to select ME/CFS patients are in our definition except paralysis, which the panel did not consider prevalent enough for inclusion in a clinical definition."

    I didn't know you weren't aware of that. I have also had the experience of having my paralysis episodes completely dismissed by doctors. Raising awareness of paralysis in ME is very much needed. Thank you for your efforts and please post if there is anything other patients can do to help.

    -Jan

    ReplyDelete

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