If you have CFS or M.E. you may be enraged if your B12 levels haven’t been tested ….

I have blogged about this before but it is worth revisiting because it is so shocking.

First of all please note, that if you have CFS or M.E., then your symptoms are also shared by B12 deficient patients. B12 deficiency symptoms can be reversed with B12 injections.

Secondly, the reason you may never have been tested for B12 deficiency may be because your doctor does not understand that macrocytosis/macrocytic anaemia (large red blood cells) is NOT ALWAYS PRESENT in B12 deficiency. In fact it can be very late stage when damage has already been done. This obsession with marcrocytosis is the focus of these harmful instructions to doctors.

The following screen shots are of NICE Guidelines – ‘Do not do recommendations’ for CFS/M.E.  It is a really tricky page to find (and has a habit of hiding) so here is the link;

https://www.nice.org.uk/donotdo/tests-for-vitamin-b12-deficiency-should-not-be-carried-out-unless-a-full-blood-count-and-mean-cell-volume-show-a-macrocytosis

For those who don’t know :-
NICE’s role is to improve outcomes for people using the NHS and other public health and social care services. We do this by:

  • Producing evidence based guidance and advice for health, public health and social care practitioners.

Taken from; https://www.nice.org.uk/about/what-we-do

There are other bullet point’s on this page but here they state ‘evidence based guidance ‘. I’d like to know what evidence backs up this particular set of DO NOT DO RECOMMENDATIONS for CFS and M.E. patients. I bet you would too.

There are many scenarios on this list which may be of interest to you but I am concentrating on the four which are connected to B12 deficiency. The date of all these recommendations is August 2007.

The first reads – Test for vitamin be 12 deficiency should not be carried out unless a full blood count and mean cell volume show a macrocytosis.


Screen Shot 2015-10-14 at 10.06.47

The second; Tests for folate levels should not be carried out unless a full blood count and mean cell volume show and macrocytosis.

Screen Shot 2015-10-14 at 09.59.49

No 3;  Tests for ferritin in adults should not be carried out unless a full blood count and other haematological indices suggest iron deficiency.

Screen Shot 2015-10-14 at 09.59.36

And finally; There is insufficient evidence for the use of supplements such as vitamin B12, vitamin C, coenzyme Q10, magnesium NADH (nicotinamide adenine dinucleotide) or multivitamins and minerals for people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), and therefore they should not be prescribed for treating the symptoms of the condition. However, some people with CFS/ME  have reported finding this helpful as part of a self management strategy for their symptoms.

Screen Shot 2015-10-14 at 09.59.22

Sinister?

Many clinicians incorrectly believe that B12 deficiency always goes hand in hand with anaemia. This ignorance is reinforced by NICE Guidelines despite the wealth of journals stating the opposite.

You will see that all the symptoms of CFS and ME are also those of B12 deficiency http://www.b12deficiency.info/signs-and-symptoms/

This misunderstanding causes patients harm. Many patient’s never present with or experience macrocytosis (large red blood cells).

It may be a very late sign in B12 deficiency and the MCV can appear normal in a patient taking high doses of folic acid. How many B12 deficient pregnant women remain undiagnosed?

See here from the NHS;

http://www.nhs.uk/conditions/anaemia-vitamin-b12-and-folate-deficiency/pages/introduction.aspx
‘Some of these problems can also occur if you have a deficiency in vitamin B12 or folate, but do not have anaemia.’

 There are many journals on this;

2012. Misdiagnosed vitamin B12 deficiency a challenge to be confronted by use of modern screening markers
(….”but its absence does not rule out B12 deficiency and it is not a specific marker as using it solely would miss 84 percent cases. Its normal range is 80-96 fl.20 MCV can be within normal range despite B12 deficiency specially with concomitant iron deficiency,….)
http://www.jpma.org.pk/full_article_text.php?article_id=3808

1995. Neurological complications of acquired cobalamin deficiency: clinical aspects.(“Pharmacological doses of folic acid reverse the haematological abnormalities (eg a MCV) of Cbl deficiency. This may allow neuropathy to develop or progress and make recognition of deficiency more difficult. “)
http://www.ncbi.nlm.nih.gov/pubmed/8534966?dopt=Abstract

To read more of these journals – or, perhaps we could call them EVIDENCE, please click to see the information compiled by @B12unme
http://www.twitlonger.com/show/n_1s0ae7m

If you have been diagnosed with fibromyalgia too, you may be very interested in this study which uses B12 and folate as treatment; ‘Dose-response relationship and long-lasting effects of B12/folic acid support a true positive response in the studied group of patients with ME/fibromyalgia.’
http://www.plosone.org/article/fetchObject.action?uri=info%3Adoi%2F10.1371%2Fjournal.pone.0124648&representation=PDF

If you have never been tested and suspect a B12 deficiency please see; http://www.b12deficiency.info/what-to-do-next/

Raising awareness; http://www.b12deficiency.info/how-you-can-help/

Please consider signing and sharing this petition https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?

 

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Acknowledgements: NICE Guidelines

9 thoughts on “If you have CFS or M.E. you may be enraged if your B12 levels haven’t been tested ….

  1. I had a B12 deficiency diagnosis in 1995 and immediately commenced with 3 monthly injections. I now have them every 10 weeks as I need it then. In 2002 I had a road traffic accident and was injured. I was never back to myself from that and later diagnosed with CFS 10 years ago. I couldn’t work and had to give up my hairdressing business. I had so much pain on a daily basis, I couldn’t think straight because of constant brain fog. The medication I had didn’t seem to work. 3 years ago I moved house and changed Doctors, immediately I was diagnosed with having Fibromyalgia with CFS and my medications were all changed along with taking pain patches. I can now say after all these years that I can bear my symptoms although I have good day and bad days. But you have to persevere and carry on

  2. I have a diagnosis of ME since 1989. I have just discovered that my folate are very low in the range and on the cusp of deficiency. I would say that there seems go be a strong correlation between ME and folate deficiency symptoms so I’m wondering if I actually have folate deficiency.

    The mystery is that my B12 levels are high, including active B12, which I don’t understand. I would have thought that low folate would be commensurate with low B12.

    Any advice would be welcome. Thank you.

    • Ann, a very high B12 serum and active B12 test can still mean there is a deficiency, parasites competing for B12 can show in a patient as a high B12 level. Functional B12 deficiency meaning there is a problems with transporting B12 to your cells which will also look high. Please see this page point 4 http://www.b12deficiency.info/what-to-do-next/
      Are you receiving any treatment at all for folate deficiency? Please work though the page above.
      Best wishes
      Tracey

  3. I have a diagnosis of b12 defiency (and have been having 3 monthly injections for years) alongside CFS, Fibromyalgia, Osteomalacia, Chronic Pain Syndrome? and Diabetes, I’m also currently being investgated for Auto Immunity Diseases. From what you’ve said, could many of my symptoms be from the original b12 diagnosis? and could a higher or more frequent treatment prevented many of my debilitating symptoms?

  4. There’s a private Doctor, Dr Myhill (too busy to take new patients) who knows something about CFS/ME and B12 – I’m not able to post the link to the page here – seems to be prohibited. If you google her and look on her site for a page called ‘Rationale for using B12 in CFS’ you can find out her views.

  5. Sadly I can believe that many people diagnosed with ME/CFS could well have B12 deficiency.
    Countess Mar asked questions in the House of Lords this year and one of them was asking what the government was going to do about the many people misdiagnosed with ME/CFS when they actually had PA (Pernicious Anaemia).

    • Hi Sarah, I agree, I imagine there are thousands of what doctors would describe as ‘heart sink’ patients who are desperately starved of B12 and other nutrients! What was the response to Countess Mar?

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