Being Believed Continues

I saw my Lovely GP this week after my medication got flagged for review, meaning it’s been a year since I last saw her.  Nothing much has changed in the last year, in fact in the last 2 years.

Seeing my Lovely GP, who is supportive about ME/CFS, usually leaves me feeling re-assured but a bit depressed because there’s nothing much she can do to help.  She prescribes to help control symptoms where she can, she offers referrals if I want them but doesn’t press anything on me.  But I leave with a sense that there’s nothing much anyone can do to help no matter how much they want to.

I read something on the internet about how many GP’s now go through the motions with Chronic Fatigue Syndrome patients.  They say the right things because the guidelines say they have to treat it as a physical illness. but privately they think their patients are just crazy or malingerers.  The advice being don’t let the patient know this because it only fuels the fantasy they are ill.

That’s pretty awful stuff to wrestle with.  Because even if my GP makes the right noises how do I know they are really invested in my care?

Well I plucked up the courage to ask my Lovely GP this time around if she had heard of  LDN (which is for another post) and if she would ever be willing to prescribe “off licence”.  She said she hadn’t (but could I give her any information) and they don’t usually do that (very sorry and all that).

I tell her a quick summary about LDN, give her a piece of paper with some urls on it and she flicks through one of her books with medications it in.  She says she will certainly take a look at the info and she will present a case to the lady in charge of deciding these things and see what she says – although she wasn’t too hopeful it would be a yes she was promising to try and get an answer quickly for me.

Exciting! My Lovely GP is willing to try even though some doctors would now be writing “difficult patient” on my file.

So, I ask, if the answer is no to prescribing it off licence would she have any objection if I were to seek a prescription for it from a specialist GP or private doctor. No problem whatsoever, absolutely, go for it.  Anything I think might help she is for me trying.

We reviewed my exisiting meds and I’m going to try upping my amitriptyline to 30mg as I’m needing more pain killers and migraine meds recently.

I told her we were in the process of re-applying for DLA (Disability Living Allowance)and could I drop a copy of our form in again for when she needs to write her report to them. Behind you 100% she says. Anything I can do to help with that she says.

OK, so while I’m here … my early blood test results have been bugging me.  Because my red cell count was high consistently but I was told it was “my normal”. Could anything have been missed?  She looks at the results and says very apologetically that’s it’s very moderate and there’s nothing really there of clinical interest. Sorry.

I’m getting answers!  I’m not getting diagnosed with something treatable but I’m getting answers.

So as I’m about to leave Growler asks if I’m want to mention XMRV.  What’s that then she asks.  She hasn’t seen the news. So I give her a quick summary about the research findings.  And she gets excited. A retrovirus?  How interesting, let me write this down. 

This is another reason for asking about LDN, because it sort of strengthens the case – it being effective with HIV (another retrovirus).  Except she says this at the same time as me.

Wouldn’t it be wonderful, she says, if it were found to be the cause?

Any doubts I ever had about whether my GP really believes in ME/CFS, or whether she just humours me, were set aside during this ten minute appointment.

I saw her willingness to help, but her being bound by the rules.  I saw her interest raised with news of a medication she hadn’t heard about and with research with significant findings.  I saw her keen to go read more and find if there was a way to help her patient, to help me.

I also had a few more hints that she has personal experience of ME in her close family – which goes a long way to explaining why she’s supportive, open minded and just a little frustrated with ME/CFS.

Having no doubts about her belief in my illness and her belief in the challenges it presents to me day in and day out, means a great deal to me.  Also I now know I need never be afraid to print out an article of interest into new research or treatment to share with her.  She’s not going to give me a black mark as a difficult patient.

Her support has given me a blue badge to use disabled parking, a Disability Living Allowance, medication for symptom control, re-assurance, knowledge, a diagnosis (which no-one else would give me) and hope.

I once read that the best gift you can ever give to someone is to believe in them.

I thought it just meant to believe in their potential, but I’m learning it reaches much further than that.  And it is indeed a wonderful gift to receive.

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16 Responses to “Being Believed Continues”


  1. 1 Nina October 15, 2009 at 10:20 am

    Oh, you are very lucky. My new (and maybe temporary) doc here is the “talk nicely to her” kind — very unsatisfactory, and the only downside to moving.

  2. 3 ashysheela October 15, 2009 at 10:44 am

    It is about time you had this support. It is nice not to have those little nagging doubts about what your GP really thinks… even if you still only go once a year, you know what you can expect and trust that she will do her best, within her many constraints. I am so pleased for you! (and hope the LDN comes off one way or another… you don’t know til you try, as they say.)

    • 4 rachelcreative October 30, 2009 at 10:48 am

      She’s always been this way I just haven’t asked for anything unusual before I guess. Having read MEA response to XMRV where they say NICE guidelines specifically say to NOT prescribe anti-virals I may not get anywhere with the LDN from my own GP.

      Still waiting for an answer.

  3. 5 Jozephine October 15, 2009 at 12:40 pm

    I had a doc like this who was the first one to say – yes, you are probably right, it may well be fibromyalgia. (This was pre-diagnosis before my fatigue really kicked in). It was his belief in me that set me off on the right road, even though I’ve had the eyebrow raisers since. I have the confidence now to challenge doctors because I am sure of my ground – thanks to that one GP who believed in me. Thanks to him, also, I have a good DLA award too.

    Sounds like you’ve found a good one. Doesn’t it make you want to give them a big hug?!

    Keep on keeping on . . .

  4. 7 Sue October 16, 2009 at 7:54 pm

    You are so right. I am constantly grateful for our doctors (mine and the kids’ pediatrician). It means so right. My GP was the first to (finally) recognize that my mysterious illness was CFS and to offer some treatments. She already had other CFS patients. And she’s always willing to hear about new treatments and try them if she doesn’t have any safety concerns.

    My son’s pediatrician is even better because she knew nothing about CFS when my older son first got sick, except that I had it. She never doubted for a moment that he was seriously ill because he’d been her patient since he was born. She is always willing to learn (unlike many doctors who pretend they know it all) – she read all the stacks of information I brought her on CFS and has spent hours on the phone with pediatric specialists I told her about, to the point that she’s now becoming our own local expert on treating it!

    Having a doctor who respects you, understands CFS, and is open-minded is vitally important – I’m so glad to hear you have one!

    Sue

  5. 9 Rachel M October 16, 2009 at 8:17 pm

    It’s very nice to hear about your experience. 🙂 I personally know how doctor’s attitude and trust in you change your life, although there are limitations in treatment.

    Even when doctors talk nicely to you because they have to, you can tell when they are sceptical…

    I hope there will be more doctor like her.

    PS. I hope Paul’s “man flu” is also believed by her. 😉

  6. 11 Alyson October 18, 2009 at 2:15 am

    I agree. It is so important to feel believed and listened to. It makes all the difference.

  7. 13 Matthew October 18, 2009 at 7:04 pm

    I hadn’t heard of LDN so thanks for the heads up on this.

    My DLA forms are here now, something I always find daunting. I’ve always tried the ‘tell them absolutely everything’ approach but still had to appeal so I wondered how you tackled it.

    On the issue of doctors, I’ve nearly always found them to be supportive but not always terribly well informed. My present doctor diagnosed FM on top of ME but considers them to be part of the same spectrum of illness. As you say, if they believe you then you can work from there.

    Excellent post as always.

  8. 15 Daphne October 27, 2009 at 9:34 pm

    Terri is trying LDN right now… if you do try it, start slow with a low dose!!!


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