Martyn Hooper MBE – Chair of the PAS

~ The Chair’s Blog ~

Chronic Fatigue Syndrome/ME

by | Feb 10, 2018 | 7 comments

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!

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Comments

7 Comments

7 Comments

  1. Celia

    Thank you Martyn you are doing a great job. I was diagnosed with ME many years before being diagnosed with Pernicious Anaemia. My Dr, at that time , said that the finger test showed that I had oxygen in my blood so did not need to check B12!!
    I was never tested for hypoadrenalism as I was told my adrenals had even tested many years ago and were ok!!!! After having a blood test privately, I have been under an endocrinologist for the past 10years. So this, also could be masked,by what the drs class as”your underlying condition” So maybe this should so be tested before diagnosing ME/CFS.
    Best wishes

    Reply
  2. Elaine

    Your efforts on our behalf are much appreciated Martyn. Upwards & onwards. Thank you.

    Reply
  3. Bree

    I would think that a concern would confounding variables for the macrocytosis…what if a patient is taking folate, wouldn’t that mask macrocytosis? What if a patient is deficient in both iron AND B12 – would the macrocyctosis still show up? Of course those of us with b12 deficiency understand the symptoms can start well in advance of abnormal lab results…

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  4. Mary Epke

    Martyn 1,000,000 thanks for all you do on our behalf . It’s difficult and time-consuming . Thanks to your wife also .

    Reply
  5. Mai Lloyd

    Thank you Martyn for your continual support. I was diagnosed in 1974 with pernicious anaemia my B 12 was tested numerous times over the years and I continually received injections monthly until ten years ago when my GP retired, the practice had a reshuffle and my B12 was reduced to every three months. I am now at the age of 73 years constantly plagued with Chronic Fatigue, an iron deficiency, heart disease, spinal stenosis, mental fogs, and severe arthritis. Despite being told at my diagnosis my monthly injections would be for life, nothing has changed.

    Reply
  6. Anemia

    Very informative article about anemia

    Reply
  7. Terry mcDonaLd

    Martyn, your efforts are appreciated here in California, where my B12 deficiency has led me to research all the interconnections of B12 deficiency and so many systems in the human body. Today my searches were for the connection between ME/CFS and B12 deficiency…no surprise to me that many diagnosed ME/CFS patients benefit from B12 injections on a regular basis. I still don’t understand why so many MDs fight/deny so many proven elements of B12 deficiency and why they continue to adamantly withhold/disallow treatment?

    Reply

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  1. Pernicious Anaemia: symptoms, diagnosis, Vitamin B12, ME/CFS and the NICE guideline review | 16 February 2018 | ME Association - […] recent blog by Martyn Hooper, Chair of the Pernicious Anaemia Society, was brought to our […]

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