Last week I was at a NICE consultation which was looking at the problems with the diagnosis of Myalgic Encephalopathy (or encephalomyelitis). Because there are so many contentious issues concerning the disease NICE are going to take a good look at the subject and issue a new Guideline for doctors.

Similar Symptoms

The symptoms of the disease are incredibly similar to those of Pernicious Anaemia – extreme and constant tiredness, difficulty thinking straight, mood swings etc. etc. And I know that a great many members of the Pernicious Anaemia were suspected of having ME and diagnosed with the condition before finally being told that they had Pernicious Anaemia.
I suspect that a great many people who have been diagnosed as having ME/CFS actually have Pernicious Anaemia; and the reason I say this is because the current NICE Guideline states that no investigation for any B12 Deficiency should take place unless there was signs of macrocytosis from the full blood count taken. Now, we know that only around 50-60% of patients with low B12 will have enlarged red blood cells and so if a patient’s blood shows no macrocytosis no investigation takes place as to whether low B12 could be the cause of the patient’s symptoms.

Testing for Pernicious Anaemia

I represent the Pernicious Anaemia Society as a stakeholder for the new Guideline and I pointed out that there was a glaring problem with the current Guideline and that any patient presenting with the symptoms of Pernicious Anaemia/CFS/ME would not necessarily have enlarged red blood cells and consequently they should routinely have their B12 status assessed. My suggestion was well received and I was told that the new Guideline would have the instruction to not investigate any B12 Deficiency unless there was sign of macrocytosis removed. And that will mean that a great many people who are suspected of having ME will routinely have their B12 status checked which may very well result in an increase in the number of people being identified as having low B12.
However, we know that there are problems with the current serum B12 test which is at best not very good at identifying a deficiency and at worst is next to useless. And there’s the added problem of there being no universally accepted definition of what numerical value constitutes a deficiency. Oh! and there is the ongoing problem with the test for Intrinsic Factor Antibodies being not fit for purpose.

Perfect Storm

All of these problems create a ‘perfect storm’ for misdiagnosis and missed diagnosis of Pernicious Anaemia which is why I have asked for NICE to take a good look at these problems with a view to issuing a Guideline for diagnosis and treatment for doctors. And that brings me to reveal the most important reason why I became a stakeholder in NICE – I get to see how these guidelines are developed and written which will hopefully be of enormous benefit when NICE turn their attention to the problems with diagnosing and treating Pernicious Anaemia. See – there’s always a little hidden agenda!