The ‘Not so NICE’ NICE Guidelines

Do you have a diagnosis of CFS or ME?

It is widely documented that chronic fatigue is a symptom of B12 deficiency, it is also known that B12 deficiency can be misdiagnosed as CFS and ME.  It is also known that macrocytosis does not need to be present to be severely B12 deficient and yet this is what is stated in NICE Do Not Do Guidelines. ‘Tests for vitamin B12 deficiency should not be carried out unless a full blood count and mean cell volume show a macrocytosis.’

Treatment of CFS and ME

Nice guidelines

Misdiagnosis possible
If doctors strictly adhere to this guideline it could be causing many serious cases of B12 deficiency to go undetected.

Many doctors see NICE Guidelines as LAW, when they should be regarded as is a recommended practice that allows some discretion or leeway in its interpretation, implementation, or use.

In contrast the following NICE Guideline appears to be rarely adhered to . . . 

It states – ‘Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.’  Many of us have to fight to get the loading doses never mind the injection every other day which is so desperately needed.

This guideline further states – ‘Be aware that oral cyanocobalamin is suitable only for the small number of people with proven dietary deficiency of vitamin B12’. Sadly some with the condition are fobbed off with these useless tablets depite the fact that they are not deficient due to diet.

In an ideal world
What we need our doctors to understand is that, ‘not every patient or situation fits neatly into a guideline. A guideline may not cover every eventuality and each patient’s circumstance needs to be taken into consideration when a treatment or test is decided upon.’

It would be ideal if all doctors diagnose with the clinical picture in mind, and effectively use listening skills. We need them to be up to speed on all the symptoms of B12 deficiency and help those in desperate need of a correct diagnosis and the inexpensive treatment required. The new BNF guidelines now record the cost of Hydroxocobalamin as 55 pence.

Best wishes, Tracey

If you are struggling to achieve a diagnosis or treatment and need a hand please:

4 thoughts on “The ‘Not so NICE’ NICE Guidelines

  1. Guidelines are taking medicine back to the dark ages. If only Evidence Based Medicine could be relied upon but when 50% of trails are unpublished and pharma pay for the results they want, what hope?

    Things are as bad in Thyroid diagnosis and treatment as you know Tracey. There is actually a line in the RCP guidelines saying “If patients remain symptomatic on Levothyroxine (the one and only drug offered, a synthetic prohormone the body struggles to identify), look for NON THYROID causes of illness.” Blame the patient!

    No wonder there is so much ME/CFS/Fibromyalgia.

Leave a comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.