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Acclaimed County Durham Doctor [Chandy] Banned from prescribing vitamins [B12] mustn't treat CFS now

user9876

Senior Member
Messages
4,556
But that first line specifically refers to testing to "exclude other diagnoses". They still seem to be saying that when other conditions are excluded, and the ME/CFS diagnosis is settled upon, B12 and the rest generally should not be tested.
Yes but it is important for people to note that other diagnostics can initially be done and I think they could argue about them being done when symptoms change to check there is no other underlying condition (including b12 deficiency). I'm assuming that the tests they mention would indicate the possibility of a deficiency but really have no idea.

I know doctors like to hide behind guidelines rather than explain there in action so I think tells them they should still be using there clinical judgement. I think the real problem in the UK is that too many GPs don't have any clinical judgement.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Yes but it is important for people to note that other diagnostics can initially be done and I think they could argue about them being done when symptoms change to check there is no other underlying condition (including b12 deficiency). I'm assuming that the tests they mention would indicate the possibility of a deficiency but really have no idea.

There are many chronically fatiguing conditions that are not tested for routinely. One is haemochromatosis, which I already referred to, which usually goes undetected. I would want to know that haemochromatosis testing is mandatory before ferritin testing is ruled out in CFS or ME diagnoses. Presentation of symptoms can be delayed till much later in life, indeed usually show up in a patient's fifties or later. If someone has a CFS diagnosis then suddenly they are immune?
 

Sidereal

Senior Member
Messages
4,856
However www.nice.org.uk/guidance/cg53/resources/chronic-fatigue-syndrome-myalgic-encephalomyelitis-full-guideline3 does still state that "Tests for vitamin B12 deficiency and folate levels should not be carried out unless a full blood count and mean cell volume show a macrocytosis."

This is insane. You can actually be dying of a B12 deficiency with a normal MCV.

Edited to add: A friend of mine almost died from B12 deficiency because of the NHS. She had biopsy-confirmed coeliac disease. Pernicious anaemia is a common comorbidity which every GP should know. She had basically every symptom of B12 deficiency in the book but because her MCV was normal she was diagnosed with "CFS" which in the UK means NO MORE INVESTIGATIONS FOR YOU EVER AGAIN since that would feed your "false illness beliefs".

Needless to say, her condition continued to deteriorate to the point where she developed neurological signs (subacute combined degeneration of the spinal cord) and could barely walk. The GP was still insisting nothing was wrong, "your blood tests are normal". A private GP saved her life with B12 shots.
 
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mermaid

Senior Member
Messages
714
Location
UK
The other problem, as I understand it, is that the ranges for B12 testing are set too low.

So you can be tested and your Dr will say your results are fine, but in fact at the levels they are set at you can have neurological damage.

Also with any range, if you are just above range then that is not optimal, but your GP will still say it's OK.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I just realized that NICE currently has CFS grouped under "Mental Health and Behavioural Conditions": http://www.nice.org.uk/GuidanceMenu/Conditions-and-diseases/Mental-health-and-behavioural-conditions . Is this new?

It is also under 'neurological' but I noticed that too last week when they launched their new glossy website. I believe a complaint has been made. Thanks for reminding me. I will try and chase...

NICE.jpg

http://www.nice.org.uk/GuidanceMenu/Conditions-and-diseases/Neurological-conditions
 

Doogle

Senior Member
Messages
200
I'm not advocating using the ME/CFS Wikipedia article as a treatment guide, but sometimes it can be useful for basic research on studies and reviews. For example, at the main article on ME/CFS, the Treatment section has a sub article named Chronic fatigue syndrome treatment. Under that article there is a small section summarizing the Vitamin B12 studies with a reference to the source.


Maybe B12 does need a proper going over. Maybe it already has in the literature - don't know, can't be arsed to check. I suppose as a patient if I believed something was helping to make me feel better I certainly would protest if it was taken away. Then again, I used to get vitamin and mineral injections weekly from this German doctor in Jersey, thought he knew what he was doing, but then he fled the island and anyway, it all seemed to do nothing for me: other than cost a lot.
 

Antares in NYC

Senior Member
Messages
582
Location
USA
i can't see how you can do much harm with B12 injections. maybe they believe he keeps patients away from "life- saving" psychotherapies.
Boom! Word!

Also, the use of B12 injections would be another piece of evidence that this illness is PHYSIOLOGICAL at its core. We can't have dangerous ideas like that spreading around. It would cost money to treat them!