Radio 4 Call You and Yours

[Sleepybunny]

Call You and Yours radio 4 programme has call in programme about ME/CFS right now 12.30pm

I'm listening to see how often B12 is mentioned.

bbc.co.uk/programmes/b006qps9

[wedgewood]

I heard some of the programme , and it seems that ME/CFS patients have problems with treatment like we do . I did hear of one patient being treated with B12 injections .

[Frodo in reply to wedgewood]

I missed this programme, but as someone who "might" have ME/CFS but for whom getting a diagnosis is "asking too much" (says GP), yes, the problems inherent in this kind of condition are almost the same - not being taken seriously for years, no accurate tests, and then little or no treatment.

Note the symptoms can be virtually identical to PA/B12 deficiency (and also low thyroid) so IMO could be PA/low thyroid, and I read on Dr Myhill's (ex NHS now private CFS specialist) website that she does (or did - haven't looked for a while) treat her CFS patients with B12. This is contraindicated in NICE guidelines for some reason: if it helps with such a debilitating condition, why wouldn't you use it as a treatment?

In fact, the NICE guidelines even have a Do Not Do instruction for testing for B12 deficiency unless a macrocytosis has been found in a full blood count. I find that really hard to fathom.

However, further down the extensive Do Not Do list, it says that some patients find B12 (and other supplements) useful as part of a "self-management strategy" but there is insufficient evidence that they work.

[wedgewood in reply to Frodo]

Try reading Dr. Sarah Myhill's book on the subject of ME/CFS . The name of it escapes me - just search for her name on Amazon . She is a GP who crosses swords with the NHS . Her aim in life is to help ME/CFS patients . Her books on health generally are excellent .

[Frodo in reply to wedgewood]

Thanks, yes, that's the Dr Myhill I mentioned have read a lot on her Wiki pages.

[Sleepybunny]

Hi Frodo,

I agree that patients diagnosed with ME/CFS could well have something else.

There have been quite a few on this forum who have had a ME/CFS diagnosis at some point including me. Some of the case studies in Martyn Hooper's books are of people who were originally diagnosed with ME/CFS.

While I was listening to programme I wondered how many of those contacting the programme had PA or another cause of B12 deficiency.

[Gaudygoat in reply to Sleepybunny]

Exactly what I thought. Just listened and it was disappointing that B12 deficiency wasn't mentioned as a possible cause of the symptoms for some of the listeners.

It is also rather depressing to hear other people more or less being told to pull themselves together.

[Frodo]

Just to repeat from my response above: the NICE guidelines have a Do Not Do instruction for testing for B12 deficiency unless a macrocytosis has been found in a full blood count.

[Foggyme Administrator in reply to Frodo]

Horrifying 😱😱😱😱

[Sleepybunny]

Hi,

There's a blog entry on B12 Deficiency Info website from Oct 26 2015 about people with ME/CFS diagnosis not having their B12 levels checked.

b12deficiency.info/blog/201...

I mentioned on another thread that the NICE guidelines on ME/CFS are being reviewed. It'll be interesting to see if the new version includes testing for B12 deficiency for everyone with suspected ME/CFS.

meassociation.org.uk/2017/0...

[Frodo in reply to Sleepybunny]

God, I hope so.

Thanks for the update.

[Sleepybunny]

One thing I remember from the programme is someone rang in who had been diagnosed with ME/CFS but actually turned out to have Lyme disease. Lyme disease seems to be another condition that doesn't get its fair share of publicity just like PA and B12 deficiency .