Taken from the NICE website .

[wedgewood]

Here is the photo which I referred to in a previous post . Only just found out how to put it on here!

[Nackapan]

They were all the very tests one of my daughters needed and eventually got .

The tilt test was done at The National Hospital Queens Square after an enlightened a a and e general doctor ordered tests initially.

The other tests were needed in 2009!!

Or infact earlier.

Well there you go.

Awful

[fbirder]

Ah!

That is from their guidance for people diagnosed with CFS/ME.

I would hope doctors would find, and use the 2019 guidance.

[wedgewood in reply to fbirder]

Yes , but I’m afraid that many doctors believe that for Pernicious Anaemia . And this is where they have read it . We have heard it from many postings on this forum .Chronic Fatigue Syndrome patients invariably have B12 deficiency. Many doctors say they haven’t time to read all the latest guide lines when PAS members print them out and submit them . And they are not obliged to follow the guide lines anyhow .

[LittleA in reply to fbirder]

Is there a link between cfs and b12? I don’t understand the nice guidelines with that

[wedgewood in reply to LittleA]

The link I know of is that CFS patients invariably have B12 deficiency . , but many other issues as well . Notoriously difficult to treat , and many doctors think it’s “ all in their head “ .

[LittleA in reply to wedgewood]

If that is the case do gps put the symptoms down to the cfs and not b12 ? Which would put people in danger in not getting the right treatment for b12

[Sleepybunny in reply to LittleA]

Hi,

B12 deficiency is sometimes misdiagnosed as ME/CFS and other conditions as well.

I was diagnosed with ME/CFS/Fibromyalgia which in my part of UK was considered to be a mental health condition and I only improved when I started B12 treatment.

I had many symptoms typical of b12 deficiency and kept asking if it could be B12 deficiency. I had B12 deficiency diagnosed in the past which had not been treated correctly.

As far as my GPs and specialists at the time were concerned, I had a diagnosis of ME/CFS , boxes had been ticked, job done, no chance of B12 treatment.

ME/CFS should only be diagnosed when all other possibilities have been excluded.

Links about Misdiagnosis of B12 deficiency as ME/CFS

b12deficiency.info/misdiagn...

martynhooper.com/2018/02/10...

I think ME/CFS is mentioned in these books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNf treatment info in this book has not been updated. See link below for up to date BNF.

BNF

bnf.nice.org.uk/drug/hydrox...

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

[fbirder in reply to LittleA]

There is a link in that some people with CFS/ME, but not all, do respond to B12 treatment. pubmed.ncbi.nlm.nih.gov/259...

[wedgewood in reply to fbirder]

Some don’t respond because B12 deficiency is not the whole of their problem .