Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Any advice for Dr's first appointment?

Discussion in 'ME/CFS Doctors' started by erin, Jan 4, 2017.

  1. erin

    erin Senior Member

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    I will see Dr. Chaudoury in couple of days time. He is the only neurologist in my area. I am funding this visit myself, very tired and confused a little -about what to ask. I know we all have different symptoms and suffer differently. What would you ask or say? What would be so essential to discuss. I want to get best out of this, I have so much problems and my head is buzzing. Any suggestion will help me at this point.
     
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  2. trishrhymes

    trishrhymes Senior Member

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    Maybe write down in advance what you want to ask - and put the list in priority order with the things you most want help with first, so with limited time you can focus on what matters most to you.

    Maybe take someone with you to take notes to help you remember afterwards what was said. Or note down yourself the answers he gives you.

    I think if it was me, I'd want to spell out clearly to him at the beginning exactly what I want from him, whether it's confirmation of ME diagnosis, or tests to see whether a particular symptom may have another cause, or advice on treatments for particular symptoms, or a general overview of his approach to treating ME, or a prescription for a particular treatment.

    Good luck, let us know how you get on (if you want to).
     
    Last edited: Jan 4, 2017
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  3. erin

    erin Senior Member

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    Thanks Thrish, I was thinking along the lines what you were saying but you've articulated so well. I'm a little panicking, first time I will be seeing a neuro. I was diagnosed 8 years ago by my GP.

    I will definitely update. Especially for the UK forum members.
     
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  4. charles shepherd

    charles shepherd Senior Member

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    Dr Abhijit Chaudhuri is a longstanding friend and colleague of mine and advises the MEA on neurology research

    He is very easy to get on with - so I hope your appointment goes well

    You might find the Answer to this recent Question from ME Essential magazine helpful

    And please pass on my regards when you see him!

    CS

    2 QUESTION: First appointment at an ME/CFS clinic – what is going to happen and how should I prepare for it?


    My GP has finally agreed to refer me to the ME/CFS Clinic at the local hospital. What will happen at this appointment? Will I now be under their on-going care for my ME? And is it OK to take my partner with me? I'm hopeless at remembering what is said at meetings like this!


    ANSWER


    As this is your first appointment at the ME/CFS clinic, I hope you will be seen by a physician - the MEA states quite clearly in the Management section of the MEA purple book that hospital-based referral services should be physician led and involve a range of other health professionals. So there should be an occupational therapist/OT, physiotherapist, dietitian etc who can provide further information and advice as appropriate.


    The first appointment is likely to consist of:


    a) taking a detailed clinical history. This to help confirm the diagnosis if there is any doubt. The doctor can also assess your state of ill health and disability


    b) a thorough physical examination – to make sure there are not any physical signs (eg large lymph nodes) that would suggest another diagnosis


    c) providing information, advice and recommendations on management. Any decisions regarding a management plan should only be made with what is called your informed consent. In other words, you understand what will be happening and you are in agreement - especially if this involves CBT and/or GET. There should not be any form of coercion to take part in treatments that you are not happy about.


    So, before you go, it's useful to think about any questions that you want to ask the staff - there should be plenty of opportunity to do so - and write them down if this will help on the day


    Nobody at a hospital-based referral service should object to you taking a friend/carer/partner with you. This can, if fact, be very helpful as there will probably be a lot of information and advice to remember - so it's useful to have someone there who can also ask questions, take in what is being said and make some notes if necessary. The other option – if there is nobody to accompany you – is to use a recording device to record the consultation. But do ask permission before you do so!


    Depending on the policy of the hospital service you are going to there will be a number of options for follow up and on-going care:


    · in some cases you may just be referred back to your GP


    · where further investigations regarding confirmation of the diagnosis are being arranged you will probably have another medical appointment with the doctor


    · where there is a good multidisciplinary service available you may be be referred to other health professionals who can help with specific topics – activity management, diet etc


    Some services place people into a group management programme that involves a series of sessions covering specific topics such as activity management, diet etc. Some people find working in a group, and meeting other people with ME/CFS to be helpful. But others do not and may find the experience quite tiring.


    Further information:


    · Regarding CBT, GET and Pacing: I suggest you have a look at the summary of our 'patient evidence' report before you go:


    http://www.meassociation.org.uk/how-you-can-help/introduction-to-our-cbt-get-and-pacing-report/


    · The MEA purple book covers all aspects of management in more detail:


    http://www.meassociation.org.uk/201...ch-masterwork-is-published-today-1-june-2016/


    · The MEA website has a directory of all the hospital based referral services in the UK: http://www.meassociation.org.uk/nhs-specialist-services-throughout-the-uk/
     
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  5. erin

    erin Senior Member

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    Thanks for the post and detailed info @charles shepherd, I will pass your regards to Dr.Chaudhuri.
     
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  6. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I'm rather surprised that you say this - was it a mistake?
     
  7. trishrhymes

    trishrhymes Senior Member

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    Seems pretty normal to me. For a first visit to a specialist they will need to check the diagnosis is correct, and this will involve various physical checks.
     
  8. charles shepherd

    charles shepherd Senior Member

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    NO - this was not a mistake!

    Nobody should be diagnosed as having ME/CFS without first having a proper clinical history taken, a full physical examination, and baseline investigations arranged

    The physical examination should include checking for lymph node enlargement in the neck, axilla, groin etc

    Minor enlargement of the lymph glands in the neck can occur in ME/CFS

    But more significant enlargement, or a suspicious feel to an enlarged gland, must lead o further consideration of conditions that can cause ME/CFS like symptoms and lymph node enlargement (e.g. lymphoma)
     
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  9. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    When I had enlarged painful lymph nodes in both armpits my doctor ordered an ultrasound for my complete lymphatic system to rule out other conditions.
    http://www.two-views.com/ultrasounds/lymph-nodes-test.html#sthash.7cpYowKm.dpbs
     
  10. NelliePledge

    NelliePledge plodder

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    This is very interesting. I was referred after asking my GP 6 months after I'd been diagnosed to ME/CFS service. I had to have blood tests done for the referral but I've not had any physical examination either by the GP or at the hospital. I haven't had any contact with a physician at the hospital or any further tests there. I met with a physiotherapist who went over the information I had already provided in the questionnaire. And was then placed on the waiting list for the group programme.

    I assume this is quite normal from what I've read on forums although my Dr is very pleasant I basically have to read up on ME then decide what it is worth asking for and unfortunately the NHS isn't offering much so there isn't much to ask for. Next time I see my GP I'm going to ask about swollen glands. I've regularly had them over the last 5/6 years but not seen the doctor unless I needed to be signed off work because I knew I would be told it was a viral infection take paracetamol and rest.

    I had to change surgery last year because I was seeing locums all the time and no continuity. When I asked if I might have FM as a friend with a diagnosis suggested that I was told no sore throat isn't a symptom of FM but no mention of CFS. I went away and read more about FM and that led me to CFS. When I asked the next Dr about CFS she said oh we don't find it helpful to give that diagnosis it is better if we concentrate on helping you with any symptoms and gave me a leaflet for generic CBT service. Then signed me off for 4 weeks with depression/fatigue. I had at the time mild well managed situational depression due to my mum having severe dementia for 10 years. The following day I signed up for the new surgery where I've been so relieved that I'm able to get continuity.

    I did get some benefit from the ME/CFS clinic group sessions mainly from being with others in the same boat. All the information can be picked up easily from the web eg from MEA and AFME booklets. I already do relaxation/meditation and again that can be picked up online The main positive was around the discipline of having structure of reporting to others how you were doing with pacing/ progressing on your personal goals.

    I've recently bought a copy of the purple book so I'm going to work through that and ask my GP practice if they've got a copy. Sorry for rambling I know I'm lucky to only have moderate/mild symptoms. It is truly shocking the lack of support available for people with severe ME.
     
    Last edited: Jan 6, 2017
  11. Molly98

    Molly98 Senior Member

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    Hi @NelliePledge and welcome,
    Sadly in many places in the UK this is a good as it is going to get.
    If you are being put in a group, it is likely that it is going to be the CBT, GET approach. Have a good read through the MEA information, particularly on CBT and GET at least if you attend the group you will be well informed and if you do feel encouraged to push yourself when your body is telling you the opposite you will be aware of the harm this can do and be less likely to be misled into this, which has been so harmful to so many.

    Also if it is implied that it is faulty illness beliefs, a fear of exercise or other psychological reasons perpetuating your illness and holding you back from getting well, It would be a good idea to walk away, as I am sure you know this is a complete myth with no evidence to support it and a large amount of growing evidence showing biological abnormalities. None of us need having our heads messing with by telling us it's psychological, this also does us harm.

    However, you may be somewhere that does not have this approach and offers good information around pacing.

    Do you know how long you will have to wait?
     
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  12. charles shepherd

    charles shepherd Senior Member

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    The MEA has funding available under our medical education programme to send out free copies of the MEA purple book direct to a GP at his/her surgery address

    Please contact Gill or Helen at the MEA office in Buckingham if anyone wants to arrange for this to be done

    The book is sent with a covering letter from myself and we can add a note about why it was requested if required

    MEA purple book for health professionals:

    http://www.meassociation.org.uk/201...ch-masterwork-is-published-today-1-june-2016/

    CS
     
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  13. NelliePledge

    NelliePledge plodder

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    Hi thanks for replying I've already done the group in the Autumn. it has moved on to be more about pacing. They did mention CBT/GET but it wasn't a big part of the course I just said that I can't afford to spend any energy on exercise for the sake of it when I've got activities I have to do i.e. I'm still working part time. I did mention the rituximab trials as well when they were talking about how people get ME and the different triggers. I'm going through the process of trying to get a permanent reduction in my hours at work as a reasonable adjustment so I needed to go on that programme to make clear to my employer that ME/CFS is recognised by the NHS.
     
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  14. NelliePledge

    NelliePledge plodder

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    Thanks Dr S I will take it with me next time I go and check if they've got a copy. If not I'll follow up with your colleagues
     
  15. Molly98

    Molly98 Senior Member

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    Good luck with this, I can see your reasoning behind doing the group thing. I hope it works out for you and you are able to adjust you hours and that over time your health improves
     
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  16. erin

    erin Senior Member

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    My GP was very good, she directed me to integrative care as soon as she saw that something was very wrong with me. She mentioned m.e. and unfortunately there was not much NHS can do for m.e. and there was not understanding of this disease she said. She never mentioned GET or CBT.

    The integrative care, Homeopathic Hospital then (8years ago), was great. My dr there was fantastic, still is. She manipulated many remedies to smooth down the horrible symptoms. She largely managed this with success. I am lucky in a sense that my experience of NHS not as awful as other UK patients. Thanks to wonderful GP and integrative care dr. I have praised my GP online few years ago and I will again.

    Unfortunately things were changed for the Homeopathic Hospital, hence the new name integrative care, the services are somehow reduced, and changed in a way that I don't even understand.

    The other thing is, I travel and spend a lot of my time in better climate. When I'm desperate I get private health care and not very expensive where I travel.

    This made me seek private doctors here in the UK as well. This is something I will be trying for the first time. I'm not even sure what to expect. I may not be able to fund if any tests required. Which surely needed, just seeing the doctor itself is not enough with such a complex disease.
     
  17. NelliePledge

    NelliePledge plodder

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    Hi Dr S @charles shepherd ive asked my GP if she had a copy which she didn't and said she would be interested. So I've contacted your colleagues and it is on its way to her. Thanks very much for letting me know about this
    NP
     
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