The admins of this forum have recently been made aware of an incident where a member ‘Sunvox’ sent a Private Message (PM) to member ‘Wobblybee’, in response to an exchange of posts concerning dietary supplements. Sunvox’s post was about a new dietary supplement he is taking in an attempt to help his ataxia and Wobblybee’s, which was copied and pasted from another website, concerned Dietary supplement scams and what to consider before taking them.
The Private Message was as follows-
‘I thank God everyday you don’t control all the voices on the internet. It is my belief that you represent evil on the internet because you would seek to suppress voices with which you do not agree.’
Sunvox has expressed his opinions at length on many occasions regarding the taking of supplements being beneficial for ataxia. While we are pleased that he feels his regime (including the taking of multiple supplements) is working for him, we have had cause in the past to reprimand sunvox for his advocacy of unpoven supplements for which he apologised. This is because many people disagree with him about supplements having an effect in ataxia, including clinicians and scientists working in the field of ataxia, or people who are cautious about purchasing and taking supplements.
Just as he, or anyone else, has the right to express his opinion in a public place, others have the right to disagree with him publicly without the fear of recrimination, particularly of the type that he has shown to wobblybee which was distressing, offensive, abusive, unprovoked and bullying.
The admins of the forum have an obligation to ensure the welfare and safety of all of its members. We believe he has breached this in the worst possible way and as a result felt we had no option other than to block him from the Ataxia UK forum.
We know that many members enjoy reading Sunvox’s post and have found them helpful. We also know that there are many members who do not enjoy his posts and find them unhelpful. We endeavour to manage any issue that arises on the forum (and thankfully there are not many) as diplomatically and fairly as possible, keeping the welfare and safety of all members at the forefront of our minds. On this occasion and as stated above we felt he should no longer be a member of the forum.
We apologise for any distress this has caused, but thank you for your understanding.
Yours sincerely
Sue Millman, admin of the forum and CEO of Ataxia UK.
Harriet Bonney (HarryB), admin of the forum and former Chairman of Ataxia UK.
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Hurrah!....,. I have always found Wobblybee to be a friendly member who always respects other members views on the Ataxia Community, but Sunvox was always overwhelming in his posts about supplements etc, I ended up not bothering to read his posts.
I always look forward to his posts. I don’t agree with blocking him; he always recommends talking to your doctor about the supplements. His exchange with another, however unfortunate, isn’t there a way she can privately block personal messages? I don’t agree with blocking him from this forum. For a disease that’s incurable, I appreciate any advice and recommendation to consult your practitioner. Just my two cents.
We are all adults, I think this is censorship, and wrong. If one doesn't approve of a poster, don't read them. Why should I not be allowed to read his posts just because another member had a problem. Sunvox researched everything , and merely gave his opinions which we could accept, or reject. Please bring him back...
As a former (28 years) social worker retired now, I think Sunvox (Joe) brings much valuable information to this forum! I do read his posts, although I don't have the kind of ataxia he has and have never taken any of the supplements he lists! I think it's awesome that he's been able to turn his ataxia around! One can choose whether or not to read his posts, that's the beauty of free speech! He does research things extremely well (even posts where to find the information) and always says to check with your doctor before trying anything. Granted we all must be aware of how we respond to others, as we're adults and must show each other respect always. But if someone commented adversely to one of my posts, I would simply ask them why and tell them they were being offensive! I would hope for an apology, but would not demand they be exiled from this forum! I'm sorry if Wobbybee was treated poorly, as no one deserves that! I always read her posts and find them very valuable as well! I hope in time the powers that be will reconsider letting Sunvox back onto this site, if he still wants to be a part of it, as I think he brings a lot of good information to this forum! Ataxia is too horrendous not to have others views/information! Just my very humble opinion!
Having read some of the replies to Sue’s and my post yesterday about blocking sunvox from the Ataxia UK forum I felt I had to reply.
We had cause to block sunvox from the Ataxia UK forum 3 years ago. Following this he wrote to Sue “You were right in pointing out that my post was indirectly telling people to take supplements. I hope you believe me when I say that was not my honest intention. Rather I wanted people to take my information and speak with their doctors to determine if there might be any merit to the idea.” On that occasion, given his apology, he was allowed to return to the forum.
On this occasion we feel that the language sunvox used towards another site user is completely unacceptable. When is it ever acceptable to say to someone, publcly or privately, and in whatever context, that they ‘represent evil’? It is not.
His blocking on this occasion is nothing to do with his views on supplements or the content of his posts. It is wholly concerning the fact that he thought it acceptable to use the language he did towards another forum user.
I am shocked to hear so much lengthy criticism of the actions taken by admin. Surely that's their prerogative and should be accepted. Bullying and inappropriate language is not allowed.
I only really log on here to see if Joe has updated anything. He often seems the only words of hope available. My husband was 'diagnosed' with Ataxia at 34 and i pushed and pushed for more testing to get answers but found we just got very generic advice about non spill cups, him changing jobs and the inevitable decline he had before him. There seems few official updates on here......occasional invites to assist with reasearch on the effects of Ataxia. The effect for our family has been nearly 6 years of fear, hopelessness and no siblings for my son. Joe offered a different outlook....a real belief that actually there may be a treatment on the horizon. My now 41 year old husband still manages just fine with a normal cup......and i for one am happy to thank Joe's suppliment advice for that! I am sorry if he has upset another member privately but the hope and information he shares publicly is priceless to many.
Thank you Sue, Harriet. It is reassuring to be reminded that this forum is moderated.
We will all go through periods - due to physical, emotional, neurological factors - where we are at increased vulnerability of taking on board claims of a particular idea or treatment without considering our very individual physiology and negative side effects. In terms of side effects, I include not only physical symptoms, but also financial, social, and the potential rejection of conventional medicine. Where a new treatment or therapy is thought to be beneficial, critical analysis and scrutiny should be welcomed, not responded to with insults.
This forum is very valuable to those of us who cannot access face to face support. It should be remembered however that we don’t always know who is behind a particular profile, or what their objectives are. With that anonymity, it is also much easier to go too far in terms of what we post, things we would recognise as unacceptable we’re we required to say them face to face.
Sorry to hear about this. I thought he did post some good things. I also think what supplement might help one person may not help another, it could be our genes are different. Specialists do not know everything, but might know more in the future with genetic research. I have heard of people saying they have cured themselves from cancers by taking supplements, when there was no hope., so who knows. We all should ask our doctors about any supplements before taking them anyway. We can all think differently and we should all be nice to one another. I think having an illness can sometimes make us frustrated or even angry and maybe we can say the wrong thing at times. Should we forgive, maybe. People can apologise.
I always thought Joe/Sunvox was very overwhelming in his posts and can't say I understood everything he said. While I appreciate lots of peolpe found his advice helpful this does not give him the right to say something hurtful to Wobblybee. Why did he privately message her? Did he not have the guts to do it on here. He obviously knew he'd not get away with it so sorry but coward comes to mind.
Hello admins and thank you for the detail you provided.
I am fairly new to this group and haven't posted or commented much. Hello to all.
I frequently visit to read through members' posts, and I have skimmed through many of Sunvox's contributions (with serious reservations).
I was given a diagnosis of SCA6 fifteen years ago, and I have done extensive reading about the many variants of SCA since then.
I am a very active admin of a large SCA group on Facebook for several years now, so from that background I have points of view on two issues:
1. the opinions expressed by Sunvox
2. unacceptable behaviour by Sunvox, and how an admin would deal with it appropriately
It is wonderful that Sunvox has found a regime which he sees as having slowed/stopped the progression of his SCA1. However his opinion is entirely subjective, as he bases his "results" solely on outcomes he has observed on HIS OWN CONDITION. This is not scientifically credible or reliable.
As well as numerous supplements, Sunvox also advocates strongly on behalf of a vegan diet, and a strenuous regular exercise routine which involves running on a treadmill. These are working for him (at this time), but may not be practical for others or work for them.
Sunvox emphasises frequently, that ALL of his recommendations need to be adopted to guarantee success. He is adamant about this. ALL of his suggestions must be followed.
In January 2017, Sunvox was still a member of the NAF group on Facebook ... and advocating strongly re trehalose and rizulole. I have no more to say about that, apart from the "changing horses mid-stream" analogy.
Unfortunately there is a tendency for members of disability groups to accept any "hope" which is given by posts advocating for meds/diets/supplements etc. This is false hope however, and it is the admins very difficult job to filter these.
I respect this group's admin for their complete transparency in throwing this open for discussion.
I appreciate that the admins have given Sunvox several opportunities to carefully consider his posts, and that he has been blocked previously (which served as a warning, but Sunvox has overstepped the mark again).
Finally, that Sunvox approached an inoffensive and reasonable member of this group, to call her "evil" ... and "I thank God every day you don't control all the voices .... " etc. Those are not the words of a sensible person, which casts more doubt on the credibility of his claims of a "cure".
That does not seem right to me. I would not what mine to be left on if I was no longer welcome. It might mean his comments were good so we will keep them, but not you. Just my opinion, it does not feel right either.
Bullying or making unusually unpleasant negative accusations to someone with Ataxia is very destructive. Much more so than with a healthy person. It is entirely possible this personal attack could affect someones symptoms very badly. Challenged ego?
All one needs to do if they get a nasty private post is erase it...I still call this censorship. It changes this forum. I lose just because Wobblybee was offended. Why can't you just suspend him for a bit.
I agree with Kerrington. I always found his posts laughable, and his claims ridiculous. But, I always felt he had the right to post whatever he wanted. It's up to YOU to decide to believe it or not. Sounds like he has a messiah complex, which again, is quite laughable. There are a lot of nasty people out there, if you receive something that is not agreeable to your sensibilities, delete it and move on.....
Well there's free speech and then being offensive!
I often read sunvox's posts and find them interesting. If his regine is slowing or halting the progression of his ataxia then hats off to him. He wants to share this to benefit other people suffering from ataxia. If he is to be permanently removed from the site then people are missing out on some possible help. He does always say to speak with your doctor before taking supplements.
For those not interested then don't bother to read them.
I myself recently replied to another member's comments which I found unacceptable. I just reinforced the ethos of this site.
Obviously wobblybee doesn't deserve to be called evil and I always read her posts. She's a very valuable member of the community.
But I think another suspension would be better for all and an explanation of what this site is all about to him and certain others.
Donald Trump makes fun of the handicapped, calls some woman ugly, uses hurtful, derogatory words to describe opponents...no one removes his speeches from tv.
if only we could! His actions also sell newspapers.....lack of respect, rudeness and disregard for how your actions affect someone should never be considered ok or acceptable by anyone - especially someone with such a responsible job. He can't be removed from TV but we shouldn't condone his negative behaviour. People have freedom of speech on this forum as long as they are not causing direct distress to others. It is not like twitter - it has administrators for a reason. People accessing this site are often vulnerable and desperate - and we know the damage negative social media comments can do. Some people have commented to "just ignore the message" "just delete the message" and I am glad they have the strength of character and mental strength to be able to do that - but we shouldn't expect everyone to possess the same strength. I meet many people with ataxia who are mentally fragile and I am therefore supportive and understanding of the role the administrators of this site have in overseeing peoples' behaviours.
I understand that some people loved Sunvox’s posts but he crossed a line and the admins can’t ignore that. It’s just like people who got mad at the BBC when they fired Jeremy Clarkson as if workplace violence is ever ok.
Offensive remarks made on this forum or privately to another member are never acceptable. Wobblybee is and has been a valuable contributor to this and other forums. Everyone is entitled to an opinion but that does not give entitlement to be nasty or hurtful to someone that doesn't agree.
Beryl is one of the most helpful and informative people I have encountered.
In a climate where social media is awash with Be Kind, I think we do all have a responsibility with freedom of speech to be kind. Being kind to someone who has been wronged is easy ( wobblybee) but being kind to someone who appears to have wronged (Sunvox) is harder. I agree that he appears not to have exercised his responsibility to be kind whilst exercising his right to freedom of speech, but I think we still have a responsibility to be kind in how we communicate with the wider forum about this x
If objectors disagree with the rules on here, perhaps they should also be blocked. Surely rules override the entitlement to free speech.. just saying ...
I just feel that this site is for supporting, giving advice, sharing experiences etc.
And we should always choose our words with care - it's very easy on social media to write nasty comments as you're not face to face - it's also easier than a letter. One of the social media problems. That's how I understand things.
We have never felt it necessary to create a set of rules for this site as contravention of normal social codes has been, thankfully, very rare. In general, everyone who communicates on this site is polite, kind and courteous, which has meant there was never a need.
If we do assemble any, and we are thinking about it, they will just be common sense i.e. be polite; make sure the post is factually accurate; encourage people to seek clinical advice if they are intending to embark on a new 'treatment' option. We'll let you know what we decide - but I have to say, I would prefer that people just continue in the friendly way that this site operates.
Feel free to scroll but my thoughts for what they are worth: I'd hate to be an administrator of a forum so thanks to those who have taken that responsibility on, I realise it's not an easy posting especially in instances like this. Personally, Sunvox posts challenged me, I found the idea of a 'cure' often hit a raw nerve in me, but then I talked myself into viewing his evangelical approach as his way of coping. We all cope in different ways. He coped by seeing a 6 and I coped by seeing a 9, and we were both entitled to our stance, just standing at opposite sides. I guess where it went wrong for Sunvox was when he tried to force his 9 on a 6 in an unkind way and I agree that administration did have a duty to step in. I think where I got uncomfortable was when the decision was taken to share the details of the private exchange between the 2 members involved. I appreciate there may have been good reasons for this (which I don't need to know) but in the absence of knowing: My only point of reference is that a colleague of mine was dismissed from my workplace. I knew the rumours of bullying, but management never commented on the dismissal, and I never expected to know. I trusted management had found my colleague in breach of the established code of conduct and had followed procedures that ensured data protection and confidentiality etc. was maintained and everyone was safe guarded. I know it may seem an awful lot of work for a forum but... I do wonder if situations like this could be nipped in the bud if we did have a basic members code of conduct and agreed admin procedures for when it goes wrong. I think we need a trusted community where everyone is kept safe from the top down and I have faith we can do that. LOL I have thought about this way too much today! Take care all you 6s and 9s and everyone inbetween 😉x
I am an Admin member on another HU community, we have rules that no posts about politics, or religion..... because everyone is different, and respect for every member of that community, if you have a problen with someones post, you PM an Admin member..... if a decision is made to block a member from the community, you PM that member telling them why they are blocked.
Admin also have the ability to alter a post where needbe, and Admin can also delete a post.... but again the member whos post it was must be advised by PM.
Personally I don’t think that they should have said anything unless they were asked where he was. At that point I would have just said something like ‘he was blocked from the group for personally attacking another member’ and left it at that. It seems unnecessary to have a rule against something like that because adults should know how to behave.
Oh I agree, but I think sometimes it just makes awkward situations more straightforward to manage if you can say, you agreed to this, you broke it, this is the agreed procedure and it's in black and white. I think it makes it factual and less emotive.
I have Parkinson's disease, but because it is so similar to Ataxia, I have followed Joe's (Sunvox) posts very intently and I have frequently sought his advice through private messages. He is one of the most inspiring and intelligent members I have ever interacted with.
Like all of us at one time or another, Joe did something which was wrong. I think he readily acknowledges that. Assuming he has acknowledged being wrong and apologized sincerely to the person he hurt, what good is served by banning him? I think the point has been made and he should be allowed to fully participate.
Well I for one am glad he’s been blocked! I found his posts to be very self centred & it was either his way or no way! Infact I used to dread seeing one of his ‘miracle’ posts or reply’s on here!
Those who are saying he gave ‘hope’ to others are in my opinion clinging onto some belief that he has found the cure to ataxia-which I can understand, as those of us who suffer from ataxia are so desperate for a cure to be found. But he has NOT found the cure, he merely thinks he has & to push his ideas & thoughts into others is totally wrong!
Do ppl not think if what he says really does work, that the Drs, specialists & professors in the field of ataxia wouldn’t be recommending others to take these supplements & diets etc?!
The only hope & help he is giving is the wrong type, Like some suggesting weed is the next miracle cure!
This site has many many vulnerable ppl on it who would & will try anything to get their old life back & for someone to advocate that they have it is wrong in every level of human decency there is. I’m not bothered if he’s telling ppl to see there gp about it-he’s wrong to put his his views into others end of!
Whilst some are saying to simply block & move on, is in some cases not as easy as that. Like I said previously, this site has many vulnerable ppl on it & a year or 2 ago I would probably have said the same(I’ve had ataxia for 8 years) & over those years I’ve gone from a very strong, independent, working woman to a very very vulnerable, weak & depressed person who at times is often suicidal, so to receive a PM like this would have, in my case had sent me off in years, believing what he was saying was right & that I was indeed an evil person etc & I would have removed myself from this site & no doubt gone into a bad bout of depression, because this is how real depression affects ppl. Not everyone is the same & not everyone can cope with things the same. He knew he was in the wrong & the consequences of his actions & that is exactly why he sent his thoughts by PM & not as a reply on the thread! He is one of these type of ppl who appears to have 2 sides to him- nice in public where everyone can see, read & believe him & a totally different one in private.
So thank you admins, I believe You’ve done exactly the right thing, your actions & your post has reassured me & no doubt others like me that any complaints or worry’s will be taken seriously & action will be taken. You’re doing a fabulous job-for free & in your own time! the way you monitor this site, I’m very appreciative of it. 👏🏻👏🏻👏🏻
It is a difficult role, and HarryB (Harriet) takes the greater part, all in her own time. Indeed, we could not run this site without her dedication. She looks at every single post!
For my part, as Chief Exec of Ataxia UK, I get on here from time to time, but I'm paid to manage all of the affairs of Ataxia UK, so I'm not able to participate as much as I would like.
Harriet makes sure that all the posts are accurate and not misleading - it is great to have as our lead admin, someone who is so committed, qualified as a medical doctor, has ataxia, and has so much understanding of the ataxia community and it's issues, through her many years as Chairman of Ataxia UK.
As briefly as possible. Whatever the extent and value of Sunvox's research, it doesn't give him the right to describe the activities of a fellow sufferer as 'representing" or being a part of a body which 'represents evil on the internet'. On the other hand as unpleasant as his invective was, Sunvox has the right as do we all under such circumstances, to express his frustrations but not in this way. I'm fairly hard-bitten but I can still imagine others suffering upset and sleepless nights if they'd been sent such a note. Sunvox patently should not have written what he did in the way that he did.......... The consequence was that he was taken out and shot at dawn.
Was this the only appropriate response from the managers of our internet community?
No! If Sunvox were asked to apologise for his intemperate expressions and that apology published on this site it would perhaps be the beginning of a way forward. If he refused this manner of apology then suspension from the site should be considered.
No! because in this small group we all have responsibilities to one another. It seems from the comments of others that we are losing someone who always had his eye on methods and treatments for easing our lot. Perhaps we need Sunvox. Whether we do or don't I think we have a duty to domesticate him within the site and to point out to him that a fellow sufferer who disagrees with him is not a de facto emissary of evil. Eventually, perhaps Sunvox will reach a stage where he will be able to accept opposition to what it seems are his very valuable contributions
Sue, I can appreciate the dilema you are in. However, I can't find the article that Wobblybee sent that initiated Sunvox's response. Has it been removed and was that the extent of the direct message communication between them? Cuirious, as with any written communication meaning can all be so easily taken out of context.
I do not have Ataxia, but I monitor the community to follow Joe Peck, a.k.a. sunvox.
I’ve had Parkinson’s for 10 years and actively participate in that community, where I ‘met’ sunvox. I am in contact with him via email outside of either HU community. We developed a relationship after I had admonished him a couple times for what I felt was obnoxious behavior. Each time I called him on his inappropriate comments, he acknowledged he was wrong, took responsibility, and apologized.
Joe feels terrible about his comments and wishes all of you to know that he is deeply sorry. His apology is truly heartfelt.
He made those comments on the day he was going through life-and-death decisions regarding his father. It does not excuse his behavior but it was an extremely difficult time for him. He is asking for forgiveness.
He has asked the HU administration not to ban him, but instead to suspend him. They have declined.
Since his rudeness was confined to a private message, personally, I think a written warning and a 30 to 60 day suspension would more appropriate. (I am perplexed why HU administrator would revealed the comment to the whole forum.)
Banning someone from a health community deserves a robust conversation, so I’d like to add my two cents.
First, let me say the HU administrators are faced with difficult decisions and do an excellent job. They should all be thanked and appreciated. This website is a godsend and savior for thousands. They have my full support and utmost respect.
I agree with banning people for behavior in egregious circumstances, but not for content -- because it is censorship no different than censorship of literature or science.
When you prohibit one person from speaking, you deprive many from hearing.
When you do that, you take it upon yourself to decide what information others have on which to base their decisions. You insert yourself in their personal healthcare, yet know nothing about those people.
HU administrators say they want to ensure statements are factually correct. That’s not possible or desirable for three reasons. First, every couple months, there may be hundreds of assertions of fact and it would take dozens of PhD molecular biologists working full time to deal with the volume. Secondly, and more important, many assertions of "fact" are unknowable or unprovable.
There are doctors, nutritionists, scientists, and legitimate, peer-reviewed data that supports every diet ever published -- all in conflict with each other. If healthcare professionals and scientists cannot agree on the facts surrounding nutrition/supplements/healthcare, hopefully HU can recognize they do not have the credentials to resolve most factual assertions.
Lastly, there are two cohorts in every HU community. Those who believe you shouldn’t do anything without your doctor’s approval or without scientific evidence and those who don’t agree with that. I am of the latter and here’s why.
Parkinson’s progression accelerates exponentially. There is a tipping point in Parkinson’s progression, after which, deterioration comes swiftly.
I think it foolish to wait for FDA, my doctor’s, or the approval of people who run health-related websites for me to try various therapies when the risk profile is low and reason to believe the therapy may provide relief.
There may well never be competent data produced for most supplements because the compounds cannot be patented and turned into profits, so many of us have to make decisions based on anecdotes and whatever existing science there is.
Were the HU administration to prohibit those discussions because benefits can’t be proven factually, they would deprive thousands of people with Parkinson’s of relief.
I simply ask that each of you, participants and administrators, consider who among us is in a position to know what’s best for somebody else. I certainly am not.
I too have had reason to block messages from Sunvox, He/She was getting very abusive pushy about me taking supplements, I for one am glad he has gone. I felt very uneasy at some of his inboxes and in the past myself have brought it to the moderators attention, I was adivised i couldnt block him on the forum, but could block messages from him, it ws only a matter of time before they over stepped the line. it was getting horrensous when he was inboxing me, it felt as though only his oppinion mattered, and i was wasting my time with what any Doctor or specialist waas advising. I for one wont miss him!
I’ve been on this site a few years. I’d like to say it’s encouraging to see everyone’s thoughts. You can agree or disagree. You can read a post or not. . Being called names is hurtful but he did not threaten her life. I would offer him to return and apologize. If my kids say something hurtful they are told to apologize, I don’t throw them out of the house. It’s an opportunity for learning how to get along. I think this has provided feedback for all on how to speak to each other on this forum. Bullying is not acceptable. We all should try to get along. We all crave support with our diseases. People can relate to each other here and not feel alone. I don’t want anyone to feel alone or hopeless. Im a religious person and picture I’m talking to Jesus or Mary before I speak. It is my hope Jesus will forgive me for my sins.
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The Ataxia.UK Specialist Centre At The John Radcliffe Hospital - my experience
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