Wednesday, 12 October 2011

Unrelated - Shorter Version

Suggestion: We make a video of us briefly discussing points which need to be addressed by everyone responsible.  I would be happy to put it together if enough participants join in (  Because some people don't own cameras they can record on, still images can also be sent in.  I wrote a script (which is just a guide and can be adjusted to participant's liking).  I will post the script below and include fictional names to give you an idea of who would say what.  This will be updated with participant's forum usernames in order to avoid confusion about who is saying what.  Recordings should be kept quite brief in order to fit in as many people as possible and keep the video interesting, but we could do individual videos/stories at a later date if this is something participants are interested in. 

Section one would address the misconception that ME sufferers just developed depression:
George: I was happy
Lily: I was happy
Buttons: I am happy
*Whoever else participates*

After this section, one person would say something like:
Mary: The only thing that depresses me is…

And participants would continue from here by listing one symptom that they find particularly depressing/upsetting/frustrating.  This is to address the misconception that ME is just about being a bit tired and forgetful.  Examples:
Pillow_Slayer: Mentioning amount of pain suffered
Sleepyowl: Stating the isolation ME has caused her
*Whoever else participates*

Participants would then talk about the confusion over what type of condition ME is.  Like this:
George: ME is currently defined by the World Health Organisation as a neurological illness
Sarah: But doctors in the UK follow NICE guidelines, which
Lily: Despite being updated in 2007 to inform doctors about diagnosing ME, don’t give a clear definition

*Video shows a quote from the NICE guidelines*

Harry: It changes subject without having agreed upon the type of condition ME is
Sam: And a number of studies report a continued confusion or disagreement by GPs about this
Tina: When sufferers aren't given the correct information, it can lead to them struggling to accept their condition as "real", which can result in feelings of guilt and even depression
Rachael: But doctors are not being provided with the growing number of studies that show ME is neurological
Frieda: Not only does this contribute to the continued belief that ME is psychological
John: Some doctors even refuse to acknowledge the illness and put the symptoms down to depression

The next section addresses the stigma sufferers face because of certain implications about ME being psychological.
Heather: Whilst the main "treatment" of Cognitive Behavioural Therapy may help some sufferers with the emotions ME can cause
Simon: The implication of this therapy is [that] - quote - "your problems are often created by you”
Rebecca: The statement that therapy can help sufferers "control" their symptoms by changing their "behaviour"
Hallie: And by challenging any thoughts which stop their health's improvement
Annie: Further suggests a belief that ME is of a psychological nature
Paul: And the only "control" we have over our symptoms is being able to rest when we need to
Lily: Which usually comes at the expense of losing any normality in our lives
Jill: But CBT is usually the only treatment offered to us – if any is offered at all
Sian: That is unless we can afford to pay for treatment in private clinics
Mindy: Which most of us can't do because we aren't able to work
James: And despite often being housebound or/and bedbound, too many ME sufferers don't get past the 13 week assessment stage of Employment and Support Allowance
Alex: This can leave a lot of sufferers in an even more vulnerable position

Rounding it up:
George: Over the years, different articles and guidelines have called for GPs to develop a better understanding of ME
Sian: And improved support for sufferers
Annie: But many of us still aren't experiencing this 

Paul: ME is thought to affect up to 0.5% of the population – a higher rate than Parkinson's Disease and Multiple Sclerosis
Frieda: So why aren't all sufferers getting the support they need?
Lily: A clear definition of the illness
Rebecca: Recognition from the medical community of the condition's neurological status
Hallie: More information provided for newly diagnosed sufferers 
Heather: Consideration of the diagnostic tests used in private practices, to show the neurological problems rather than to only rule out other illnesses
Buttons: And a consideration of the treatments offered in clinics such as Dr. Wright's

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