Martyn Hooper MBE – Chair of the PAS

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Meeting at the House of Lords

by | Jun 28, 2015 | 4 comments

imagesI’ll be in London (again) on Tuesday for a meeting with a group of peers regarding undiagnosed Pernicious Anaemia masquerading as Chronic Fatigue Syndrome/ME

Many of the members of the Pernicious Anaemia Society were originally told that they had CFS/ME because their tests results came back showing no B12 Deficiency and No Intrinsic Factor Antibodies.  The new guidelines state quite categorically that the current serum B12 test should be ignored if the patient has all or some of the symptoms of Pernicious Anaemia and the patient should be treated using replacement therapy injections of B12.  Likewise, just because a patient’s blood work didn’t show any intrinsic factor antibodies doesn’t mean that he or she doesn’t have Pernicious Anaemia rather the patient could have negative antibody pernicious anaemia – NABPA.

We know that very few GPs have read the new guidelines so just how many people whose blood tests indicated nothing wrong were then told that their symptoms were due to CFS/ME?  Probably many thousands and that is what I will be talking about on Tuesday.

Following that meeting I will be meeting with the Treasurer of the Society to discuss future funding options in the usual haunt in Paddington Station.

I’ll try to update you on the outcome of the meeting soon.

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4 Comments

4 Comments

  1. Jacquie

    I was told 3 years ago i had PA when my blood works showed very little or no B12 , i got loading doses then 12 weekly injections and pushed for 8 weekly injections which i go about 6 months ago, doc has been repeatedly checking b12 levels often and now says i don’t need them as i have 2000 count ( was not on iron tablets at same time ). Now i don not get B12 but get iron and Vit D . Doc refuses to check my B12 now for at least 6 months and she blames my lack of B12 3 years ago on diet , my diet has never changed i have always been a meat eater .

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  2. Alison

    Thats exactly what happened to me Martin. Told I had CFS and lost 3 years to SACD and B12d symptoms. And my b12 was 168 yet I was not treated. No IF test available in my area. They put me on antidepressants and sent me to CBT and mindfulness sessions. A friend told me to push for B12. After 6 weeks of b12 injections I was walking and even dancing again.

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  3. Sarah

    I suspect that this happens a lot. I have had various labels including fibromyalgia and M.E.

    The only test that ever showed any significant result was a B12 test a few years ago which showed an obvious deficiency.

    I had loading injections but did not get any more injections as I was told my blood levels were back to normal. My IF tests were negative. If only the BCSH guidelines had existed a few years ago I might have got a diagnosis of negative antibody pernicious anaemia.

    I suspect a lot of my symptoms are now permanent.

    I wondered if Dr Charles Shepherd,medical adviser to M.E. Association had any thoughts on this.

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  4. Linda

    Long term ME dx & yes you’ve guessed B12 never checked because not anaemic & even now I’m only on injections for ME despite a level of 197 years ago & horrendous symptoms, everyone dx ME/cfs/fibro should have B12 injections to see how they improve, my intrinsic was negative but it’s not a reliable test, they can be present or not, I’ve given the bcsh guidelines to gp pointing out the treatment for neuro but still only on 3 monthly, I do way more than this.

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