I am done!: I am done with this forum... - Pernicious Anaemi...

Pernicious Anaemia Society

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I am done!

I am done with this forum. The snooty response from admin to Wedgewood and others was utterly contemptible. Goodbye friends and stay healthy

44 Replies

Good bye . Take care

Wishing you the best. Take care

Might you be doing your face some damage by cutting it off?

I'm as sorry that fbirder is gone as much as the next person. Without his response to my first desperate post on the forum I may have ended up in a very grave physical place by now.

Equally, his assertion that 'the b12 molecule is too big to pass through the mucus membrane of the tongue so all b12 is orally injested' is flawed and made me think thrice about whether I had PA or not. And Admin has confirmed that this is not an isolated case.

He was told to behave and he didn't. It is not the same without him but is it worth losing your own support network over?

No, it most certainly isn't!

I think the admin team have been superb in a very difficult situation and they have used cool, calm, collected and accurate language in their carefully worded response.

While "only perpetrators condone abuse" they are only left with the option they have taken.

Fbirder was frequently inaccurate and tended to blind people with his long words and often misplaced claims to knowledge, mixed in with his genuine knowledge so you always had to check everything he said - which wasn't necessarily a bad thing - but wasn't acceptable when it came with an often thoroughly unpleasant attitude if you didn't blindly lap up what he said.

Few people realised how many times his posts were intercepted and rewritten so as not to cause offence. A huge thank you goes to all the admin team for their help to spare us from much of the unpleasantness that sadly exists in all fora and walks of life.

Many people have been baffled by his being allowed to carry on this long and the explanation from admin was welcomed by me.

Over the years there have been a number of truly excellent scientists - and other informed, clever people - whose posts have all contained insightful, correct and supported information who have left this forum because they don't want to be rubbished by him.

While he has unquestionably contributed a certain amount of good information, what have we lost from other kind people who don't want to post or reply, knowing they might belittled by someone less reliably knowledgeable than themselves?

Foggyme profile image
FoggymeAdministrator in reply to deniseinmilden

Thank you deniseinmilden.

And I heartily agree about some of the excellent people lost to this forum. Sincere apologies to those who feel that we admins were too slow to act.

I’m lost, what happened?

Foggyme profile image
FoggymeAdministrator in reply to Bonjourtristesse

There's a long forum history to this, going back five years.

If you read my reply in the link below (last one in the string prior to,post being closed), you'll understand some of what's happened.

healthunlocked.com/pasoc/po...

Ah, I see.

Thanks for pointing this out, deniseinmilden, yes I felt intimidated to even question Fbirder .I quietly do my research still not feeling confident enough to share and have ambivalent feelings about his postings. Some are good and others are in bad taste showing off impatience superiority towards us who are trying to make sense of this all. On another note , I was disappointed to read that PAS has decided to only fight for those with a 100% diagnosis of Pernicious Anaemia. I cannot find this on my medical file although my Neurologist then said I have had this all my life looking back on my medical history. It now shows as B12 deficiency , with injections 1 monthly or more when necessary , a GP in a different town I moved to changed this for no apparent reason to 1 in 3 month. In my family there are now 4 of us being treated for B12 deficiency , 2 children by the B12 clinic in the Netherlands and what a difference that has made to all of us. The youngest one has finally started to grow!!! Catching up with education !!!and that all as result of specialist treatment now twice a week for the coming 2 years . All the years visiting various specialists for falling behind in growth and behavioural symptoms is now down to a lack of absorbing vitamins and minerals and can be rectified. A ‘ medical label ‘ or a lack of one can be a hinder to one and a opening of doors to others.

Sallyannl profile image
Sallyannl in reply to ACritical

I agree with you on PAS decision , six in our family have b12 deficency, none confirmed with PA.I think this was wrong and in fbirder case broke the camels back so to speak.

This is just my opinion, but it did raise alot of questions and unruffled a few feathers.

Let's not dwell what's done and move forward.

Foggyme profile image
FoggymeAdministrator in reply to Sallyannl

Hi Sallyanni.

'I agree with you on PAS decision'

I'm can’t quite make out if you still think the PAS is focusing on PA alone (as per fbirder's misrepresentation) or whether you are aware of their actual position.

Just in case, here's a link that sets out the actual PAS position:

healthunlocked.com/pasoc/po....

Excuse me - I suspect that any lack of understanding is purely mine (up since 4.30am so things are now getting foggy around the edges 😯🙂).

Sallyannl profile image
Sallyannl in reply to Foggyme

No. As far as I'm concerned b12 deficiency is b12 deficiency what ever label you attached to the condition. I have never attempted to get an IF confirmation as this wouldn't change anything in my eyes. I have it full stop.

Foggyme profile image
FoggymeAdministrator in reply to Sallyannl

I’m not debating or doubting that (I think we may have our wires crossed).

I was simply trying to clarify the PAS position in order to debunk fbirder’s misrepresentation of it.

Sallyannl profile image
Sallyannl in reply to Foggyme

Wires crossed

ACritical profile image
ACritical in reply to Sallyannl

Read reply from Foggyme. You will be reassured.

Roses46 profile image
Roses46 in reply to ACritical

Hope you don't mind me asking but I've a very small 6yr old who seems to have food issues and I'm worried she will inherit my B12 issues. My mum also had it prior to her death. Just wondering what sort of behavioural issues to look out for? Fatigue isn't an issue - totally the opposite! - but she can be very challenging. I don't know what happened with Fbirder so I'll have to look back on prev posts. There is someone who posts long posts with lots of links in it, who ses very helpful but I've found all that info a bit overwhelming and I struggle for time to read it all, what with work and the 6yr old. Was this Fbirder or am I barking up the wrong tree?

Foggyme profile image
FoggymeAdministrator in reply to Roses46

Roses46. Please can you post your question in a new post? You'll get a better response from the whole forum since the only people who will read your question here are those who may happen to read this particular post (also, it’s not good forum etiquette to ask questions in someone else's post - but don’t worry, not all know that).

To answer your other question, the person who posts and provides lots of information and useful links is Sleepybunny. B12 deficiency is complicated, and there's a lot of information to absorb - especially when new to it. I always read the elephant in chunks - a bit at a time makes it easier to deal with. 🙂

Roses46 profile image
Roses46 in reply to Foggyme

Ah thanks, and sorry. Sleepybunny is very helpful so was hoping wasn't them! I just wish I had more time to absorb stuff. I'm a but unwell post covid (to top it all) so will do a bit later on. Thanks x

Foggyme profile image
FoggymeAdministrator in reply to Roses46

Oh no, so sorry about the covid! Hope you pick up again quickly.

About the reading - not all of the links Sleepybunny leaves may be relevant to your particular case so might be worth scanning and being selective - just focus on what's most relevant. And you can always post and ask more questions if you need information something specific - a quick route to getting to the heart of the matter.

It’s so tough having to deal with all this stuff when unwell (and post-covid, to boot).

Just as a quick thought - I shouldn’t worry too much about your daughter - many children have food 'issues' (my grandchildren included). If you have any particular cause for concern, you can always ask your GP to test her B12 levels (with all the caveats here about how potentially unreliable the treat is - hence symptoms are equally (if not more) important than the test). If she is developing an issue with B12, symptoms will evolve that go beyond potential behavioural issues - and the symptoms of B12 deficiency in children are the same as the symptoms of B12 deficiency in adults (though perhaps harder to identify in very young ones).

Good luck with it all and be well soon x

Roses46 profile image
Roses46 in reply to Foggyme

Thank you. I'm probably going to take her to the docs anyway ref food as she will go days not eating anything decent if we are away and can't have her 'usual' foods. X

Foggyme profile image
FoggymeAdministrator in reply to Roses46

Yes, children can be quite particular about food. I remember one holiday in Portugal where my son would only eat sausage and chips - for every meal! I decided that any food was better than no food - and he reverted to his 'usuals' when we got home (luckily quite healthy, sausage and chips not being his 'usual').

I think what really matters is a good balanced diet over a period of time.

Good luck.

Roses46 profile image
Roses46 in reply to Foggyme

Lol, sounds just like mine! Unfortunately her usual diet isn't varied enough (we do try). Lots of fruit but that's bad for the teeth - can't win 😁

It's really hard anyway - without B12d - let alone covid on top!

You have my full sympathy and I wish you as well as possible as soon as possible! x

Thank you!

Foggyme profile image
FoggymeAdministrator in reply to ACritical

Hi ACritical

'I was disappointed to read that PAS has decided to only fight for those with a 100% diagnosis of Pernicious Anaemia.'

I'm afraid this is another of fbirders ‘misrepresentations'. If you read the post in the link below, that explains what the PAS position actually is. And why their position is important and will bring benefits to all with absorption issues leading to B12 deficiency.

healthunlocked.com/pasoc/po....

ACritical profile image
ACritical in reply to Foggyme

Yes, that’s what I always thought! Thank you for the explanation, I will re read the new posting again to make my mind understand, I still have issues with retaining information. I tend to copy and paste interesting postings in my notes so I can re read and do further research. Thank you for telling us the way it is! Clears my mind about that issue.

Thanks for saying this. I also applaud the way this was handled by the admins. It is unfortunate that because the admins have done such a good and attentive job over the years, people don't have the full picture and are only able to judge by what they allowed through.

Even with their editing and filtering, I have found myself afraid to say the wrong thing, ask the wrong question, or question the authoritative assertions that were being made, lest I be made to feel like an idiot. My body *was dying* as a result of B12 deficiency, as is true for many of us. Many of us are permanently altered and living every day with an incurable, chronic illness. I don't want to "silence" people or "stifle free speech" or whatever but there is a time and a place for everything and I want this to feel like a SAFE place for people who are scared and struggling and looking for help. It should be noted that speaking harshly to people, telling them they are wrong or ridiculous, and invalidating their experiences IS silencing people, and I have seen the member in question shut people down and even gaslight them over and over. We get enough of that from doctors; we don't need it here.

It is totally possible to disagree with someone and communicate that in a way that doesn't make them feel stupid and small. It is not a difficult skill to learn or practice. There are lots of people here with lots of scientific knowledge and resources who speak kindly and humbly, including the admins, and they have been invaluable to me without ever once making me question my own intelligence, experience, or sanity.

Totally and absolutely. You have written this so well: thank you. I particularly keenly feel the situation of having enough gaslighting from Drs without getting it from him too and am pleased you put it into words here.

I hope all the admins see your reply and take heart, realising that the support and gratitude from people with open eyes who appreciate being safe is worth more than a few misguided people's unexpected flouncing, as regrettable as it is.

I am particularly unhappy that it should be Wedgewood and Martin, of all people, who have got upset and chosen to leave, but feel they have only done so because somehow they have missed the bigger picture. Feeling safe is worth the world to me after decades of abuse from people I have had to live with until the last few years.

I am lucky that, so long as I can stay well enough to be independent, that is behind me now but I know that many, many others are not so fortunate.

All the best to you! Looking forward to hearing more from you in future.

PointOfReference Oh, is it incorrect that the B12 molecule is too big to pass through the mucus membrane and that sublingual B12 can't be absorbed that way? I had accepted that as true, because it was said very authoritatively...

Foggyme profile image
FoggymeAdministrator in reply to ktwing

Hi ktwing

Here's something (from an authoritative source) that suggests B12 is absorbed via the sublingual route:

news-medical.net/health/Why...

Though of course we know from reading of people's experience here, that though absorbed via this route, it doesn’t always 'work' to relieve the symptoms of B12 deficiency for everyone. Equally, high dose oral supplements work for some…but not for others. As yet, nobody really knows why - more research needed.

And here's a thought - based on fbirder's hypothesis, it also begs the question - if the B12 molecule is supposedly too big to pass through sublingual mucous membranes, then how do we explain the fact that B12 oral supplements are effectively absorbed through the mucous membranes of the GI tract. (But again, as above, absorption is no proof of efficacy).

lynxis profile image
lynxis in reply to ktwing

I also accepted this as true because of the way it was stated, and also the ridicule that was directed towards those who suggested otherwise, so I stopped using it. I have wondered if ceasing sublingual contributed to me having to inject more frequently. I have read studies about B12 toothpaste being effective at raising levels.

I'm not sure if you will get this but if you do, please reconsider.

I hope you will pop in now and again, if only too broaden your knowledge of b12 deficiency. Like all forums there are things we disagree with. Many people can misinterpret a reply which can upset them, as they say you cant please people all the time.Take care and wishing you good health

I personally would like Fbirder to be reinstated. I always used to look for his posts - they seemed very accessible and informative to me. Admin could always remove anything considered unsuitable. I think that's what happens on most other forums. Please admin reconsider.

I too would like to see fbirder back. I used to read all his posts. Now I just skip through posts without reading them. His advice on how to write letters to a doctor, were excellent and I’m sure he helped more people on here than he ever upset. Did admin and Pas get in touch with him to clear up any misunderstandings before the ban came? Everyone on here have hadthe chance to have their say on the banning, including subscribers and administrators. It would have been nice to see fbirder given the chance to reply.

He has been warned - including very publicly by me - on countless occasions over many years. He has had odd temporary bans and private warnings from both our group admins, and Heath Unlocked's own overall admins for his trolling behaviour.

Were you aware that several years ago he was briefly made an admin? He abused this position of power to the point that this privilege was revoked. He was fully aware of the situation.

Several of us long-timers have wondered what magic link he had to get away with so much!

It was in recognition of the usefulness of his sometimes good posts and replies (many of which were actually re-written to make them more palatable after he initially released them) that he was given so many reprives over the years despite being reported by many people.

It was only because of his self assurance and determination to belittle anyone who questioned him that many people thought he was always right when he was quite often just plain wrong.

I can assure you that he definitely upset more people than he helped - and at times caused people further harm with his inaccurate advice.

In my early days of treatment (when he too was pretty sick and, by his own admittance, more rude and bad tempered because of it) his shear nastiness when I was unstable due to my deficiencies took me to the brink of ending my own life. Now I am back to my natural self I am extremely robust and good humoured and have taken the trouble to correct some of his nonsense to protect those who are more vulnerable but I find the frequent repetition of his inaccuracies a tad wearing and it's boring making the same corrections over again.

I hear what you say Wellington1 but the admins here do a fantastic job of ensuring that our replies are safe for people to read and I have been very grateful for their correction and guidance when at times, mainly due to fuzzy thinking, I have got things wrong - including, but not limited to, typos - or overlooked things, but they are unpaid and also suffering from B12d and other health problems so cannot be expected to spend all their time sanitising posts from someone who will not learn or amend his ways, despite hundreds of requests to do so.

The reason he hasn't ever replied - despite having every right and space and invitation to - is he was so self-assured that he couldn't really see how he might, just possibly, be wrong!

Whenever it was pointed out that he was undisputably wrong he would launch into a series of trying to pick silly holes in anything that that person subsequently contributed until some of them either retaliated and were banned or gave up, despite their being more knowledgeable than him.

I'm glad you were spared the full picture and got valuable information from his sometimes excellent posts and replies.

I hope you continue to benefit from the contributions from other, kinder people who will now be more confident to post on here.

I think this is an excellent post that truly elucidates the situation. I've only posted here a few times. The first time, I got excellent information regarding where to source my own B12 online. This saved me countless days of research and likely a good amount of money that I may have lost to internet scams in my desperation to get the B12 I needed. Unfortunately, my first B12 experience was very bad - I either got a bad batch, or my body simply did not agree with the formulation. I posted on here looking for experiences to help me determine whether I needed to steer clear of a certain ingredient, brand, etc. I got a few helpful replies but then became stuck in what I thought would be an endless dispute with fbirder regarding acid-base buffering systems.

I'm quite used to this type, having worked in both academia and vet med, so I wasn't overly deterred by it, but I don't see what good he hoped to accomplish with this. Although a scientific understanding of the concepts was present, the framing of his statements in such absolute terms was simply incorrect, and it furthermore failed to provide any useful advice for my situation. Had I listened to him, I would have been forced to conclude that everything was in my head, and that I would either have to suffer without B12 or suffer with it.

My interaction with this person was extremely mild and honestly what I expect from communicating with strangers over the internet. I have no hard feelings, but I can absolutely see how this would become a major issue if the responses were more aggressive and the recipient in a more fragile state of mind. Being an admin is a thankless job and I think it's a bit disrespectful to assume the admins here are trying to excessively censor the forum when it seems they've actually done an excellent job of sheltering people from unwarranted abuse and have given this individual more than enough chances to simply play nice with others.

Exactly! I can't thank the admins enough - especially for being so careful to try to both be balanced and get the balance right!

Thankyou

I think the administrators did the best they could with fbirder. When he became a member, he agreed to the rules that the administrators have a right and duty to enforce. Given that they warned him and he still did not comply, I see it as his fault that he is gone. I’m aware of at least one time that he was wrong on an absolute statement that he made. He was not the only knowledgeable person on this forum. If he doesn’t like the rules of engagement that he agreed to when he became a member, he should start his own group. It’s unfortunate for him and us that he couldn’t bring himself to abide by the rules of this great and life-saving forum.

deniseinmilden profile image
deniseinmilden in reply to KEFNB

Perfectly said! Thank you!

Health Unlocked is great but yet don’t know sometimes if it’s regular people you are talking with real problems or it’s just Admin pretending to be people in distress... 🤔

Foggyme profile image
FoggymeAdministrator in reply to UFC80

Please be reassured - in this forum you're talking to real members who appear to share their experiences, help others, and access advice and support, when needed.

I'm quite surprised by the idea of admins pretending to be people in distress… surely not? Or at least I would hope not 🙂.

Knowing the sort of things that you guys have, in addition to B12d as well as it, you are qualified to be our leaders and guides just from the genuine level of real hardship you suffer all the time.

And all this care and phenomenal knowledge for free. I'm humbled by each and every one of your responses and am very grateful for everything you all do. x

UFC80 please appreciate all they do for us.

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