the link about B12 is dead (just goes to the publication's front page), but pretty sure they mean ME/CFS.
continue reading:
http://www.thejournal.co.uk/news/health/acclaimed-county-durham-doctor-banned-7387569
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Acclaimed County Durham Doctor [Chandy] Banned from prescribing vitamins [B12] mustn't treat CFS now
- Thread starter WillowJ
- Start date
the link about B12 is dead (just goes to the publication's front page), but pretty sure they mean ME/CFS.
continue reading:
http://www.thejournal.co.uk/news/health/acclaimed-county-durham-doctor-banned-7387569
alex3619
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This is not very different from what happened to my doctor from 1993-5. Its when I first realized there is a political dimension to all this. I actually wound up being photographed for a local community newspaper, because along with seven or eight other patients we were standing up for our doctor. We were all in the photo together.
SilverbladeTE
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considering the British system has been encouraging and protecting child abusers all the way to the very heart of government, guess what I think of ANY "establishment" crap like this?
Mum's GP sexually molested her and two other women I knew of, but he was a GP, a psychiatrist and a kirk minister so of course no one would believe women saying he was a pervert
GMC let Shipman and Bodkin Adams commit/get away with mass murder....
bah to hell with the British system sooner it is wiped away the better, sick foulness.
Mum's GP sexually molested her and two other women I knew of, but he was a GP, a psychiatrist and a kirk minister so of course no one would believe women saying he was a pervert
GMC let Shipman and Bodkin Adams commit/get away with mass murder....
bah to hell with the British system sooner it is wiped away the better, sick foulness.
SilverbladeTE
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Alex
yes, you are either "in the old school tie network" or you're screwed
or old school pervert network
or old golf course/freemason/orange lodge back slapping group of assholes
etc
it's like the Reformation, any dissent is heresy which must be DESTROYED
plus possible cover up just by suspicion of their being a problem related to adverse vaccine reactions, pesticides or whatever
yes, you are either "in the old school tie network" or you're screwed
or old school pervert network
or old golf course/freemason/orange lodge back slapping group of assholes
etc
it's like the Reformation, any dissent is heresy which must be DESTROYED
plus possible cover up just by suspicion of their being a problem related to adverse vaccine reactions, pesticides or whatever
The NICE guidelines for ME/CFS, especially their "do not do" bullshit for ME/CFS is an atrocity. Though it's good to finally have proof that those fucked up "guidelines" are actually inviolable rules.
It's insane, it's harmful, and it shouldn't be tolerated.
It's insane, it's harmful, and it shouldn't be tolerated.
Firestormm
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He hasn't published any research. Though he is quoted somewhat as developing some sort of scale or other based on his patient support group clinical research... I don't know. Couldn't find much. Myhill mentions him as well somewhere on her site. But I only Googled briefly and could then see no actual published papers for him.
I must say B12 did sod all for me. There was a lot of publicity about this chap - again from Google - and his B12 for fatigue claims. You'd have to look. I dunno what dose he was prescribing or how he was prescribing it (pills or injection), but maybe that too had some bearing on his case...
Honestly I do find it 'strange' that on the one hand we are ever calling for proper evidence of claims for treatment, and yet on the other we seem perfectly willing to advocate for those who prescribe things with no apparent scientific claim e.g. supplements.
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.
But, horses for courses. Such is life. I'm tired. Sorry it's not a great post. I don't want to get into any arguments...
I must say B12 did sod all for me. There was a lot of publicity about this chap - again from Google - and his B12 for fatigue claims. You'd have to look. I dunno what dose he was prescribing or how he was prescribing it (pills or injection), but maybe that too had some bearing on his case...
Honestly I do find it 'strange' that on the one hand we are ever calling for proper evidence of claims for treatment, and yet on the other we seem perfectly willing to advocate for those who prescribe things with no apparent scientific claim e.g. supplements.
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.
But, horses for courses. Such is life. I'm tired. Sorry it's not a great post. I don't want to get into any arguments...
There's plenty of proper evidence supporting B12 supplementation for people with B12 deficiencies. It's also completely harmless even in huge doses, and many people say it helps them. Hence trying B12 is far more reasonable than trying antidepressants for non-depressed ME/CFS patients, when those haven't been properly studied and published about either.
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chipmunk1
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i can't see how you can do much harm with B12 injections. maybe they believe he keeps patients away from "life- saving" psychotherapies.
I think that is the major problem which NICE and the NHS is having. They have adopted a psychosomatic model (even if they don't necessarily admit or even realize that), and any biological testing or treatment undermines the very basis for the cheaper and psychologically-based therapies which they recommend and are invested in.
Firestormm
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I know. Presumably one would be actually tested for a deficiency before treatment.
Like I said I am knackered so this is only for information: http://www.mayoclinic.org/drugs-supplements/vitamin-b12/evidence/hrb-20060243 and is very general with no actual research links.
I do have a 'feeling' that some meta-analyses were carried out on B12. But I really should check I guess.
Anyway, to bed!
But that's not even allowed to happen under NICE. Doctors are not supposed to test for B12 levels in ME/CFS patients.
Additionally, B12 might have benefits beyond getting B12 to a normal level. Very high doses seem to improve my hypotension issues somewhat, and help a lot with my daily ME/CFS background pain.
NICE don't disallow most tests. They specify a list of tests that should be done and say that a doctor should do other testing as they see necessary for the symptoms and to make a diagnosis. Doctors may say that's not in the list but it does have that caveat. So if someone has symptoms possibly associated with b12 deficiency a doctor is able to perform testing and respond appropriately.
Actually NICE says no B12 testing for ME/CFS patients, unless other blood results are abnormal. Though they've either moved the relevant "Do Not Do" pages very recently or they're no longer visible to the general public.
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." The guidelines are about the same regarding testing for iron levels, orthostatic intolerance, infections, etc.
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?
@user9876 - Here's the new location for "Do Not Do" guidelines for ME/CFS: http://www.nice.org.uk/guidance/cg53/resources/do-not-do . I'd be very surprised if these guidelines aren't the basis for the doctor discussed in this thread being in trouble.
chipmunk1
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http://www.nice.org.uk/GuidanceMenu/Conditions-and-diseases/Mental-health-and-behavioural-conditions
from the page:
Reminds me of France where Autism is seen as a Psychosis. So we are somewhere between Alcoholism, Psychosis and self-harm.
I think a third world country could provide better care than that. What a joke.
No it's a hundred year old nuttery.
In the same document they state it is not known what causes CFS. Yet they think they know better than the patient when and how long to rest. Maybe they should stop pretending they are experts?
If they knew what was going on they wouldn't offer CBT the most unspecific treatment of all which essentially means: We don't know how to treat. We don't what's going on. So let's pretend we are experts and offer some CBT.
from the page:
Reminds me of France where Autism is seen as a Psychosis. So we are somewhere between Alcoholism, Psychosis and self-harm.
I think a third world country could provide better care than that. What a joke.
No it's a hundred year old nuttery.
In the same document they state it is not known what causes CFS. Yet they think they know better than the patient when and how long to rest. Maybe they should stop pretending they are experts?
If they knew what was going on they wouldn't offer CBT the most unspecific treatment of all which essentially means: We don't know how to treat. We don't what's going on. So let's pretend we are experts and offer some CBT.
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From the text of the full document
http://www.nice.org.uk/guidance/cg5...ome-myalgic-encephalomyelitis-full-guideline3
I think the first line is an important one for patients to note around investigations in that it allows doctors to do what they think are appropriate. Hence a doctor should never be saying the NICE guidelines don't let them do that test but they should be explaining why they think the test is inappropriate if that is why they are not doing it.
A few lines down it specifically mentions b12 testing (I didn't remember this bit) where it doesn't say its not allowed but does add a but caveat to when it is allowed. I don't actually understand the meaning of the caveat.
On complaining about a doctor who didn't even do the basic blood tests listed in the NICE guidelines the hospitals comment was the NICE guidelines are not a protocol so don't need to be followed. They then said that the Dr was a well liked member of the dept and hadn't done anything wrong!
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.
alex3619
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This is not only nuts, its dangerously nuts. Haemochromatosis can present as chronic fatigue. Its a common genetic disorder. I am a carrier, so I have my ferritin tested. It turns out I have super high ferritin but not iron, which indicates some kind of inflammatory process. Haemochromatosis is fatal but can be treated successfully in nearly all cases. Ruling out serum ferritin in idiopathic chronic fatigue, which is all Oxford is anyway, is a criminal negligence case waiting to happen. For NICE to support this is an obvious case of severe and dangerous bias.