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Empowerment in the Doctor’s Office: Overcoming White Coat Syndrome - Solve M.E. EmPOWER ME Conf 2019

Discussion in 'Advocacy Projects and Campaigns' started by Andy, Jun 25, 2019.

  1. Andy

    Andy Committee Member & Outreach

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    Hampshire, UK
    From the video description
  2. Trish

    Trish Moderator Staff Member

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    I have watched this. There were some helpful points made. Here are a few I remember.

    I think most of them are fairly obvious, but it can be useful to be reminded.

    If you have a 10 or 20 minute appointment, you can only realistically expect to have one or two symptoms addressed and need to make further appointments for other symptoms. There isn't time to deal with everything in one appointment.

    Trying to start meds for several different things at the same time causes confusion if you get side effects. Best to tackle one thing at a time and get that sorted before moving on to the next most troubling symptom at a later visit to the doc.

    Don't take in pages of stuff and try to read it out to the doctor - that wastes time. Hand it to them to glance through much more quickly than you could read it out.

    Better still, write the few key things you want addressed in that visit on an index card. Tell the doc. your aims for the visit and focus on those. Be realistic about what can be dealt with in one visit.

    Don't go in and say, I've done the research and I want you to prescribe me drug X. Approach it from the direction of describing the symptom clearly and let the doc. advise on which drug is best to try.

    Don't try to advocate and educate the doc. about ME during your consultation. Focus on getting help for one or two specific symptoms.

    Don't assume that because the doc knows nothing about ME they won't be able to help you. Focus on describing a symptom fully - eg what your specific problem with sleep is, rather than just I need help with sleep.

    Explain if you tend to react to drugs that you need to start with low doses.

    If it's not your regular doc who has all your records, bring a list of all the meds and supplements you are currently taking and dosages. They will need to know if anything they prescribe clashes with what you're already taking.

    If you are a carer accompanying someone to a medical consultation, don't interrupt the consultation. Be there to support and remember what was said for discussion afterwards.

    It can help to practice beforehand what you are going to say to the doc and/or write it down (briefly).

    If you have orthostatic problems, lie down or find something to raise your feet on so you can concentrate better during the consultation.

    Give the doc and idea of how disabling the illness is by a quick example or two from your daily life. For example, I can only shower twice a week in good weeks and need to lie down for hours afterwards to recover. That gives a quick snapshot of the level of severity.

    Make sure you are pacing properly. Are you really listening to your body and its needs often enough through the day. (Klimas)

    Some exercise is possible in tiny short bursts of 2-3 minutes to help stave off deconditioning. (Klimas - I assume she excludes very severe patients from this - she didn't say).

    If you're in the USA and you don't have access to an ME specialist, Klimas says functional medicine or integrated medicine docs can be good as primary docs as they tend to spend more time with patients and take a whole body approach.
    Last edited: Jun 25, 2019
    Annamaria, MEMarge, Comet and 11 others like this.
  3. sea

    sea Senior Member (Voting Rights)

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    NSW, Australia
    Thank you for the summary Trish, I haven’t been able to watch the video.
    Most of those points seem reasonable.

    One I disagree with is a carer not interrupting the consultation. I’m sure there are some carers who are unhelpful in a consultation in the same way some patients are, but there is also often a need to interject. I would say it would depend on the level of functioning a patient has. I was my elderly mother’s carer, and she would often mishear or misunderstand a doctor’s question, forget relevant information or provide incorrect information. It would have been a waste of the appointment not to interrupt.
    MEMarge, ahimsa, Dolphin and 3 others like this.

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