Administrator's Right to Reply: Who Is This Forum For / Proposed New Guidelines For The Diagnosis and Treatment Of Pernicious Anaemia.

[Foggyme]

Dear All

Many of you will have seen two recent posts, the first suggesting that this forum is only for those with a firm diagnosis of Pernicious Anaemia and the second making pejorative comments about the PAS and its Chairperson, in relation to the development of new guidelines for the diagnosis and treatment of Pernicious Anaemia.

Those posts have now been deleted by the original poster.

I am now invoking an Administrator's right to reply. I am doing this for the following two reasons:

1) To reassure forum members that this forum is not, and never has been, just for those with a confirmed diagnosis of PA

2) To mitigate the potential for reputational damage to the PAS and its Chairperson, Martyn Hooper, through and by ill informed, erroneous and pejorative comments made in this forum (a public arena).

I'm going to copy and paste those original administrator replies, in full, the most recent coming first:

FoggymeAdministrator41 minutes ago

All, once again, can I clarify, as follows…

As per my comments in a previous post, it has NEVER been the intention that this forum is only for thoseh with a confirmed diagnosis of PA. This was presented in the following string for those who may not have seen it:

healthunlocked.com/pasoc/po... [Note: this post has been deleted by the original poster so the link no longer works - the reply referred to is printed in full, below this one]

fbirder, you make this statement :

Now the PAS are arguing that anybody without a confirmed diagnosis of Pernicious Anaemia should be thrown under the bus when it comes to NICE recommendations.

This is absolutely incorrect, ill advised and, not to put to finer point on it…downright rude! You would do well to remember that this forum is sponsored by the Pernicious Anaemia Society and that nobody has worked as hard as Martyn Hooper to champion the cause of those with PA. And that includes recognising that the majority of people with absorption issues who cannot get a diagnosis do, in fact, have antibody negative PA - AbNegPA (a point made in this string by eclilley). If we lose this forum because of ill advised and pejorative comments cast out about the PAS and its Chairman… well…

Here is the position (and I'm going to be fairly brief, but you'll all get the gist of it:

There are current BSH (previously the BCSH) Guidelines for the diagnosis and treatment of Cobalamin and Folate Deficiencies. The fact that many GP's don’t read these, adhere to outdated local guidelines, fail to diagnosis AbNegPA…and a host of other issues are well known to us all, but that's a different issue and won’t be touched on here.

Here’s a link to those guidelines:

onlinelibrary.wiley.com/doi... in Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

The proposed new guidelines for diagnosis and treatment of PA will be in ADDITION to these B12 guidelines, which will remain current - the two will run simultaneously. Please note that PA is something akin to a footnote in current B12 guidelines: additional guidelines for the diagnosis and treatment of PA will address 'PA gaps' (for want of a better way of putting it) in the current B12 guidelines. So, in short, to give you a flavour of what the anticipated PA guidelines will 'do' - what the intended ideal outcome is…

1) Give more detailed information about PA - in short, educate doctors

2) Detail specific steps for the diagnosis of PA - including specific information about the difficulties of diagnosis, with an emphasis on the diagnosis of AbNegPA if no other causes for the deficiency can be found

3) Address the current 'one-size-fits-all' treatment regime so that the frequency of injection allowed more adequately meets the needs of each individual (sufficient to keep symptoms at bay)

If these aims can be achieved following negotiation with NICE and other stakeholders, it should be clear that these new guidelines will..

a) IMPROVE the diagnosis and treatment of B12 deficiency caused by PA

b) enable the currently undiagnosed to be diagnosed with AbNegPA (this is the majority of those with absorption issues who remain undiagnosed - like many members here

b) improve treatment regimes so that injections can be accessed according to need (how welcome would that be)

c) improved treatment for those with PA (even those who are IF negative) may also inform the current B12 guidelines and also improve treatment for those with B12 from other causes (it can be argued that it would be hard to argue that those with B12 deficiency from other causes require a lesser treatment than those with B12 deficiency from PA)

d) the two set of guidelines are not mutually exclusive, will run simultaneously, each will serve to improve the treatment of B12 deficiency - whatever the cause.

This is important: if PA becomes an 'add-on' to the title of the new guidelines, then PA may be regulated to a 'marginal' position - become the kind of uninformed 'footnote', be in precisely it's almost non-position as in the current BSH B12 guidelines. That would truly be a missed opportunity.

Highlighting and foregrounding Pernicious Anaemia as a disease in its own right (which it is indeed) is a good thing. It recovers PA from the medical margins and should facilitate better diagnosis and treatment - including for those who have AbNegPA - that means most of you here!

So please, enough with the claims that 'this forum is only for those with PA'. I hasten to add that any more posts that seek to address this non-existing and spurious notion will be deleted.

Thank you all.

I'm now closing this post to further replies.

FoggymeAdministrator4 days ago

All, please can I clarify, as follows…

Please be assured that there has never been any suggestion that this forum is exclusively for those with PA. This, in itself, would be ridiculous because as we all know (and as some have intimated in the ensuing discussions), B12 deficiency has many causes, there is no gold standard test for PA (or the B12 deficiency it causes), and thus it is impossible to NOT talk about all forms of B12 deficiency. Especially since many are suspended in limbo (can’t get a firm diagnosis of PA but nevertheless have B12 deficiency). This is especially pertinent since many GP's have never heard of antibody negative PA (AbNegPA). Hence we come at PA (or it's possible exclusion) via discussions of B12 deficiency - in all its insidious forms.

The previous post referred to in this post is essentially about veganism, which, as many will be aware, can cause a dietary form of B12 deficiency. Pertinent and suitable advice was left for that poster, so it clearly is not the case that this forum is only for those with PA.

So why was that post in the posted link closed to further replies? Well, for very good reasons. Firstly, this forum is not for the discussion of veganism per se. And secondly (and more importantly) we are all aware that inappropriate advice about vitamin supplements can sometimes be posted in the forum - most often without any cautions about the potential dangers of over supplementation, or the dangers of inappropriate use (in cases of underlying medical conditions) or, indeed, about potential contraindications with other medications or the necessity to take professional medical advice before taking supplements. It's worth noting that vitamin and mineral supplements are not innocuous and can, in some circumstances, bring significant harms when taken.

So the fact is that the forum administrators have neither the time nor the inclination to moderate potentially inappropriate replies about vitamin supplementation for vegans (and I'm not talking vitamin B12 here), or any other issues to do diet and veganism (there are other fora where these discussions can take place).

This is particularly pertinent with the advent of the online harm regulations - we are all responsible for trying to ensure that advice here is both appropriate and safe. For this reason the administrators will close posts to further replies if they are off topic and, in particular, where they have the potential to elicit responses that may require heavy moderation to safeguard members of the forum. I hasten to add that posts concerning B12 deficiency due to absorption issues - in all its forms - will not have the ability to reply turned off - excepting where or if trolling or other inappropriate behaviour takes place.

With the above in mind, please can I take this opportunity to ask forum members to please assist with safeguarding in the forum, by reporting any advice you may think inappropriate or unsafe, so that appropriate action can be taken.

Hope this clarifies and provides reassurance to any who may have had concerns about the questions raised by this post, namely that this forum is expressly for those with PA only. This is clearly not the case. (Though, of course, we have to acknowledge that this forum is sponsored by the Pernicious Anaemia Society, for which we are very thankful).

I'm now going to close this post to further replies.

Thanks all. Take care and keep safe.

(24)Report

I hope that those who expressed concerns in the now deleted strings will be reassured that this forum is NOT just for those with a confirmed diagnosis of PA.

In addition, it was felt essential to clarify the position about the new guidelines for the diagnosis and treatment of Pernicious Anaemia. The PAS and its Chairperson, Martyn Hooper, remain committed, as always, to improving the diagnosis and treatment of those with PA and AbNegPA, whilst simultaneously informing and improving the treatment of B12 deficiency - whatever the cause.

I make no apology for invoking (for the first time in this forum) an administrator right to reply and hope that you'll all appreciate the necessity for this and welcome the information given.

This post is for information only, so I'm turning off the reply function.

Thanks all and as always, take care and keep safe.