Calling fbirder -Where are you ? - Pernicious Anaemi...

Pernicious Anaemia Society

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Calling fbirder -Where are you ?

wedgewood profile image

You haven’t been on the forum for ages . Hope you are alright . Please come back -we miss your knowledgeable prickly posts . You spiced up the forum !

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41 Replies

Me too. You are as as cynical as I am.

Hope they’re ok too - they were always great to me 🤗

I'll second that Wedgewood!!

Ditto! A valuable, knowledgable forum member. I hope you are well. 🙂

Totally agree

Since he's been banned I doubt he'll be around much again.

It's not until they're gone that you miss them.

But I suspect he's out there, watching

What do you mean , banned? I’ve not heard of this- How do you know this, and I don’t ? Was it posted ? So what if he was a bit acerbic( or even ascorbic) sometimes ? His knowledge was invaluable . Perhaps he’s not well .

Yes, he got removed. A couple of issues arose but he did make a dig at someone quite important at PAS.

So there is always a crossable line.

Shame

eclilley profile image
eclilley in reply to wedgewood

I believe it was because he disagreed with the PAS approach to the discussions on new guidelines and stating they wanted it to focus exclusively on confirmed/definite diagnosed PA (ie. discounting all the rest of us - majority maybe - who do not have & cannot get a diagnosis bc the IF test is not 100% reliable & GP's generally aren't interested in diagnosing). But then nearly all of us disagreed with that.

So what ? Poor sensitive souls That’s life . I’ve crossed swords with fbirder myself , but his knowledge was tremendous . We can agree to disagree , can’t we ? I’m really not impressed with this . If that’s how it is , this posting will shortly be closed down . So goodbye 👋

Sallyannl profile image
Sallyannl in reply to wedgewood

Shame, everybody has a right to there opinions and no doubt he upset someone.His knowledge will be missed!

Fbirder please come back your knowledge was out of this world.we miss you

Gambit62 profile image
Gambit62Administrator

Please note Fbirder was banned after a long history (5+ years) of reporting by many forum members for infringements of forum rules, eg respect and politeness to other members, and being unnecessarily argumentative/dismissive when members shared their personal experiences which stressed and upset many forum members over the years. We, the admins, have talked to him about this many times. A decision to ban someone is not made lightly and only after (in this case many more than usual) warnings, conversation and after much consideration. We are sorry you are disappointed by the decision but we do hope you can understand why it was made.

wedgewood profile image
wedgewood in reply to Gambit62

No , I’m afraid I can’t understand . My whole feeling towards this forum is now changed . I don’t feel part of it any more . fbirder could be cantankerous , and I’ve had disagreements with him . But for goodness sake , we are all grown ups , not shrinking violets . So it has to be blandness and more blandness from now on .

in reply to wedgewood

I have to say I agree. Sometimes a short word is what some people need.

LWhelan profile image
LWhelan in reply to Gambit62

It sadly would appear that the woke culture really is taking over 😙

SallyRees profile image
SallyRees in reply to Gambit62

I really hope this ban isn’t permanent 🙁 Surely a temporary suspension is suffice if he’s broken forum rules? He’s one of the reasons I return daily to read his input.

PAS-admin profile image
PAS-adminAdministrator

Just to add: please also see our forum rules/guideline and if anyone has any questions or comments, please direct them to me in a direct message or email.

I agree. f birder didn't always agree with me and my posts; however, I can figure things out. f birder got me to actually discover new information despite the advice not being accurate for my paticular case. My case was I was lower BMI (body mass index) than the article he referenced, but the info given got me to do some research and learn.

I have to agree with wedgewood on us all being adults . I find someone on the thyroid site very dismissive if you fail to understand what they are saying but I just take what I need from others. It’s a shame that people can’t see the written word as being different to chatting face to face

Years ago I was a patient of a pair of doctors in Carshalton who were twins. They were direct, no sh*t straight talking GPs who took no prisoners and they upset some patients but ... they were probably the best GPs I've ever had, knew their stuff and gave an excellent service. Sometimes a good bedside manner is easy to give up for good medical care.

wedgewood profile image
wedgewood in reply to Espeegee

sometimes a charming bedside manner is a substitute for incompetence . I am really shocked by this business . .I do not feel the same about this forum anymore . It has lost something. I don’t know quite what to do . I feel like leaving . One sees this sort of thing in life so often I’m afraid , especially in politics . Perhaps this is politics at work . Power can be destructive .

eclilley profile image
eclilley in reply to wedgewood

Please don't leave wedgewood, you have been so helpful to me, and so many others. I know what you mean & agree, but please don't go, stay and keep it interesting & worthwhile.

Oh what a shame. How boring would life be without people like him and how sad that he was cast adrift at a time when we should all be pulling together. It's been an awful year+ and he contributed so much. Banning him feels a bit callous to be honest! (And a little like censorship!!)

I have read this forum regularly for quite some time and been a member of the PAS for more than 10 years. I have never posted on here before (I used to post on the old forum) but have found the information invaluable over the years and feel the need to add my voice to this particular thread regarding Fbirder.

Like everyone else I have read times where he has been a little short with people which, of course, I understand can be upsetting for those of a sensitive nature or when you don't feel very well. I have also read the occasional post where I have thought "Well said!"., but on balance he is the most likely person to provide something positive to think about

There are few members here who have the knowledge or confidence to challenge medical information but Fbirder does that particularly well. He is also able to clarify and demystify much of the scientific detail; a rare skill. One one occasion I disagreed with his thoughts - mercury in amalgam fillings isn't safe Fbirder, for the record - but without his input I doubt I shall read this forum. Would anyone else rather chance a prickly comment from someone who will go out of their way to provide solid scientific evidence to help you over tea and sympathy?

The administrators have a difficult decision to make here but please don't let this forum become a place that loses it's teeth.

Perhaps Admin will reconsider and give another chance as he was valued by other members.

No they won’t . i’m afraid . They have to demonstrate their total power . Thanks for your input . Fbirder has annoyed me on many an occasion . He did write once that he was very irritable when his B12 injection was overdue …. Thanks for your input ..

Such a shame that fbirder has been banned. Whatever happened to free speech? This forum has been invaluable to me but this sort of cancel culture is tiresome and I will be unsubscribing.

Distgusting banning somebody who is qualified to answer questions, the woke brigade have certainly over.

I for one hope you don’t take your bat home Wedgwood as that would be another sad loss.

If I was to excommunicate everyone in my church who was grumpy, irascible, argumentative and said the wrong thing at the wrong time, there would be two people left out of 200 and I would not be one of them. Most of them are not suffering from a B12 deficiency either. If we are taking our disease seriously, all of its symptoms have to be accounted for. When I am in need of an injection I am bad tempered, grumpy, depressed and I snap at people I love. I try to stay out of meetings when I am angry, it’s not always possible. One of my colleagues who is also B12 deficient is noticeably more abrasive just before an injection and I know not to take that personally. Could we not all agree that we accept each other as we are and as long as we don’t swear or act offensively to one another we can all cope with the cynicism , frustration and anger that comes with putting up with poor treatment and under prescribing of B12?

When I realised he was gone, I had an unsuccessful look around the other fora looking for his direct and knowledgeable input. You are another of the people on here who's knowledge and experience has helped me, and your loss would be difficult. Unfortunately, the CURRENT fb pages do not hold a candle to this. Where else is there to go?

Scientist, not medic.

The results show that there is a borderline anaemia, given the Haemoglobin and Red Cell values. These are very much borderline, and given that the reference ranges will be (Mean +/- 2 SD) then that describes 95% of the normal population. (Mean +/- 3 SD) describes 99.7% of the normal population but that isn't used for very good reasons. However, in cases where the values are on the limit of the range, then it's reasonable to assume that it just might be normal after all. If the Hb is on the lower limit, then it's likely that the RBC count will be too.

The RDW is a great indicator of stability. If anything happens to change the status quo, the RDW rises. Yours is very normal so it doesn't look like anything much is going on. A repeat test is often helpful in reassuring the individual.

The low B12 is a little bit more concerning, but if tablets make the B12 level rise then it looks more like a dietary deficiency than anything else.

If at IFAb had been performed it might have been sent off to another laboratory, and could literally take weeks to come back.

Good luck, take the tablets and listen to your GP!

Scientist, not medic. (Like Fbirder).

It is a great pity that the forum has lost him, as he could always be relied upon to participate in discussions.

I realise I've been a little controversial at times, and now realise I've probably sailed close to the wind.

Good luck and stay healthy, Frank.

Foggyme profile image
FoggymeAdministrator in reply to FlipperTD

Never aware of you ever 'sailing close to the wind' FlipperTD. Not even close.

Gambit62 profile image
Gambit62Administrator

People come to this forum for support. It should be a safe place. We are adults and that means behaving responsibly and acting also acting with compassion. People come here when they are vulnerable, anxious and confused. They do not come here to be told that their experiences are not valid. I know people who have left the forum because of the responses they received from fbirder.

I am not sure that fbirder has done anyone any favours in continually asserting that passive absorption is completely impossible in patients who have PA - something which flies in the face of all of the evidence - a whole raft of scientific studies and even testimony from one member of the forum who finds high dose oral works for them and was diagnosed as having PA using the Schilling test. fbirder might take notice of this evidence for a week but then he would be back with the categorical assertion that passive absorption won't work for patients with PA a week or so later. I would not advocate changing first line treatment for maintenance as at present we don't know what means that some patients respond and others don't but I do think that research is needed so we understand and that it should be a treatment option for patients where it works. I also think it is unhelpful to tell people that they don't have PA just because they find high dose oral works for them.

My hubby has b12d probably caused by years of metformin and omeprazole. Without the link on the NHS B12 page I would not have found this valuable source of information and support.Fbirder’s explanations have often made the complex simple and understandable for those of us lost in the minefield. I appreciate the need for rules and moderation but “cutting off the nose to spite the face” is counterproductive.

I am on other fora where a block is put on further comments on a post but I have not seen any of the contributors banned. It is a sad day when knowledge is stifled because someone is offended.

I really miss fbirder too😟

I am against banning people, especially when they have so much to offer. This person has demonstrated kindness and generosity and is not a troll. I can see that sometimes his thinking can become dismissive, but that is often the case for anyone who has a lot of knowledge. I much prefer to hear where a person is coming from especially if they have views that challenge my own. Sometimes we have to allow for conflict and trust that dialogue will see us through. How else are we expected to learn, if all we get is a diet of bland sameness? Censorship cannot be based on the idea that people have to be protected from being upset. There is no such right. Please, administrators, you have a tough job in making sure that people are confronted if they threaten violence for instance. As to someone being rude, that's another matter and I know there are powerful voices on this forum that can confront anyone who oversteps the mark.

I would urge Admin to reconsider their decision as such action may well stop other knowledgable and valuable members from commenting. I trust they have also carefully considered the credentials of any complainants, including their length of time as forum members and the nature and attitude of their posting. I have one particular incident in mind and think this forum would be a sorry state should the tone shift to one less scientific based.

Foggyme profile image
FoggymeAdministrator

All, please can I add the following:

First, addressing some of the comments (represented in quotations) made in this string, I'd like to clarify that the issue of fbirder's restricted access to the forum is not about:

1) a few 'sensitive souls' who take exception to 'acerbic' comments

2) 'prickly comments and scientific fact' being preferable to a 'tea and sympathy' approach

3) forum members 'being adults'

4) 'wokeness'

5)'the right to express opinions' and 'free speech'

6) 'cutting off the nose to spite the face' (by restricting a knowledgable member)

7) 'censorship'

8) 'a callous act' by administrators'

And it is most certainly not about the Administrators' 'destructive' desire to 'demonstrate their total power' (a view which I find totally unwarranted, not to say offensive).

What you are unlikely to find in this string are comments from those who have been subjected to offensive, rude, argumentative and dismissive comments by fbirder, experienced - and reported - by many as bullying and harassment). Fear of retribution from fellow members will effectively stop those comments from appearing in this string.

What you will not be aware of:

1) in the last 4 week period alone we received 13 reports about fbirders behaviour in the forum. This is not unusual - some months there are even more. (Now times that by twelve and then by the 5, for the 5 years of membership). That is a totally unacceptable number of reports about inappropriate aggressive behaviour (identified in reports as bullying and harassment).

2) administrators have to routinely edit responses so that they are less offensive and aggressive (a 'background' activity of which you will all be unaware).

3) Some inappropriate replies are deleted in their entirety and never appear in the forum

4) administrators have engaged frequently with fbirder over the last five years in order to try and encourage him to 'tone down' his responses and adhere to an ethic of politeness and respect for others. Something members have a right to expect from each other - this is laid out clearly in the forum guidelines

5) Temporary restrictions have been applied in the past, again in an attempt to guide towards more appropriate behaviour

6) Many members (some long standing,some new who abandoned us quickly) have left the forum due to the responses received from fbirder - on occasions, not limited to 'a few' comments but rather to more sustained 'attacks' on the their beliefs or experiences

7) On occasion, personal opinion has been presented as 'scientific fact', believed by all because of perceived expertise. However, the 'facts' (as told) have not always been accurate, attempts to correct ignored, and thus forum members misinformed and ill advised. The danger here is that the tendency is to believe 'experts' - even if and when they are wrong.

8) most recently, inflammatory comments have been issued about the PAS. Despite providing detailed information showing that this view was inappropriate and mistaken, these comments persisted - in what is a public forum and hence there is a potential to inflict reputation damage on the PAS (and please don’t forget, the PAS sponsor this forum).

So Wedgewood, a couple of rhetorical questions for you to consider:

a) how long do you think the PAS would continue to sponsor a forum that becomes an arena to denigrate their actions, posts inflammatory, inappropriate and completely wrong accusations, and thus raises the potential for repetitional damage.

b) would you, as a long term member, be willing to lose this forum due to lack of action to redress these issues?

(Rhetorical questions only - no answer required - just something for you to ponder)

And something else to ponder - given all of the above - what would you do if you were an administrator in such circumstances?

As outlined above (and following Gambit's comments), we administrators have worked very hard to try and prevent this outcome. With the exception of trolls and spammers we rarely restrict members and are, in fact, more lenient than many other fora (especially because we are aware that B12 deficiency affects mood etc).

We are aware that fbirder was very knowledgable and helped many people - perhaps one of the reasons why we did not act long before now. And fbirder will be missed. And we all owe him thanks for the good he has done here. And we wish him well for the future.

But here's the thing - no amount of expertise or knowledgeable input can act as an exemption (a free ticket, if you like) and allow (condone) bullying and harassment of members - many of whom are vulnerable and less able than some of you to withstand the onslaught (and why on earth should they have to).

Wedgewood, you ask ‘so what if he was a bit acerbic'…and state that he 'spiced up the forum'. Well, I'm afraid 'so what' doesn’t really cut it, in this case.

I'm afraid that in this instance, fbirder was the author of his own downfall - quite literally.

And I have also to say that, in the interest of openness and transparency, we did not delete this post. However, this has forced we administrators to do something that we have never done before: that is, discuss a member's behaviour in the open forum. It is something we hope never to have to do again!

We are closing this post to further replies and please note that any further discussion of this issue in the open (public) forum will be deleted.

As stated above in this string, if any of you have any further comments, please can you send them directly to PAS-admin via personal message (accessed by the chat tab at the top of this page).

Thanks all.

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