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Cross Party Group on ME

Discussion in 'General ME/CFS News' started by Yogi, Oct 9, 2012.

  1. PhoenixDown

    PhoenixDown Senior Member

    Do you have any idea of the damage to patient's credibility (and therefore health) that the "there are no tests" dogma has caused?

    We should raise awareness and get establishment to accept these tests, even if there's no treatment, the change in credibility for patients would be pivotal.
    Valentijn and peggy-sue like this.
  2. Firestormm

    Firestormm Guest

    Cornwall England
    Phoenix I am not sure why you have chosen now to drag my comment from times past to the fore. The above was more pertinent being more recent.

    Is celiac disease on the list of tests now? I forget. It is one that ought perhaps be looked at assuming a patient presents with the symptoms of course. Other than that - the world's your oyster. We could have numerous 'campaigns' for all sorts of 'tests' to be put on the NICE Guideline. What are the chances of any of them getting there?

    If only there was some evidence for suggesting that - I don't know - a proportion of patients with this diagnosis - or pre-diagnosis - were actually found to have 'Lyme's Disease'. I think though that raising awareness amongst those who do diagnose of the symptoms and presentation of other possible explanations for the symptom clusters is probably more likely to succeed. What to do, what to do?

    If the expertise (experience and knowledge) of the person making the diagnosis is not very good, if the patient is not in receipt of a re-confirmation of diagnosis following the initial one by a 'disease' specialist - then there is more chance of them being misdiagnosed.

    Trouble is until such time as ME progresses past the point of being a diagnosis based on symptomology and duration - then it is hard to prove it ISN'T ME. Of course if the symptoms presented and the patient 'testimony' raise eyebrows then alternate diagnoses can and do occur. But as we know from the published evidence - the misdiagnosis rate remains quite high especially if the initial diagnosis comes from a GP or someone with little or no understanding of this condition.

    On top of all this you have patients who continue to live, and will develop additional symptoms or experience worsening symptoms. What I mean to say is that as time progresses the chances of spotting an alternate or comorbid condition is increased - assuming of course the patient continues to engage with a doctor and whose doctor is 'on the ball'.

    If these co-morbidities and misdiagnoses then result in better treatment - to the extent that the symptoms are reduced allowing increased function - all to the good. If anyone is worried that they have the wrong diagnosis then it's always best of course to talk the concerns through with a medic. Of course there are those who will - for a fee - run a battery of tests and prescribe some supplements or other but again there is no guarantee of anything including whether or not the tests are validated.

    It is hard. I suppose the only way to reduce the chance of misdiagnosis is to see as many doctors as you can or to find a doctor willing to allay your concerns. After 15 years though the number of opinions I have received - all confirming my diagnosis - has left me feeling that I could really do without hearing any more!
  3. PhoenixDown

    PhoenixDown Senior Member

    I chose to respond now because someone recently bumped the thread and I hadn't read the last few pages until now.

    You seem to be unaware of a disbelief that spans far beyond mental health, and that's the disbelief of having a disease that "has no tests". Whether the patient ends up with whatever fits a stringent ME criteria isn't my point.This isn't just an ME issue, it's Fibromyalgia issue, an MCS issue, an IBS issue, a Depression issue, an ADHD issue, the list goes on.

    One of the biggest challenges we face is this disbelief, one of the first things the average person is going to say is "We never use to see these diseases before and there are no tests..." and then conclude they must be fake, imagined, real delusions, or other wise self limiting. They won't believe that any physical (brain or body) harm can come to patients due to ignoring or undervaluing the severity and permanence of these diseases. It causes people to see them as "Software" rather than "Hardware" problems. When we take this harm in to consideration, all the CBT in the world will not counter balance this.

    The bottom line is that we'll get more health gains through belief, therefore lowering disability, therefore lowering healthcare costs later on, and making it easier for patients to actually be able to attend appointments and future testing & treatments.

    I should hope so. However even when tests are enshrined in NICE guidelines, doctors still don't have much incentive to follow them, there needs to be more stringent regulations on doctors who refuse to test patients, and less faith placed in psychosocial explanations of difficult to diagnose disease.
    Valentijn likes this.

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