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This is where you can find out about all the amazing things going on in the Online Community. It's where you'll find news about events and awareness months; ways to get involved with Macmillan and up-to-date campaigning news from Macmillan HQ.
As some of you may know, last year we went through the difficult realisation that one of our members had not had the cancer experiences she claimed to have had. The individual in question displayed certain behaviours associated with a condition known as Munchausens by Internet, whereby individuals are compelled to create personas online who have often serious health issues. I’m sad to say that many communities – real as well as virtual – face these situations from time to time, but that doesn’t make these incidents any less upsetting for anyone involved.
We were asked to participate in a Radio 4 documentary dealing with this issue which is due to be broadcast later this month. The journalist had already spoken with some Community members and the leading clinician in the area of this condition has also been interviewed. Given that the makers of this programme had already decided to use the AnnaJohns incident in the documentary, we felt it would be best to share our experience of what happened and how we dealt with the situation. Additionally, we hope that our insights will help members and owners of other Communities to safeguard themselves.
We have been assured that where comments have been quoted, no usernames or other identifying information have been used.
No one at Macmillan will have heard the broadcast before it goes out, so we won’t know until then exactly what the focus of the programme will be or how much our Community will be mentioned.
We are committed to learning as much as possible about this condition and the behaviours surrounding it, so we can continue to improve in dealing appropriately with situations on the rare occasions they arise. We take the stance that many of you took in response to this particular event – which is that it’s better to be too trusting, than not trusting enough and deny people the support they need.
If you have any concerns or questions about anything I’ve said here, please do share your thoughts below. Or, if you prefer – drop us a line at firstname.lastname@example.org
update 1/06/12 - the BBC has published an article on its website, to promote the radio programme
I am glad to hear that this is being done, not swept under the carpet, I like others were fooled and having had to use Great Ormond street years ago when my sons were diagnosed with Juvenille battens it made feel bad not to have realised what a sham it all was. My heart went out to the family as having been through so much myself felt it extra close to home. It is a sad situation for someone to feel the need to do this, and though can not feel anything for her I do hope she gets the help she needs.
I am glad to of been apart of mac chat for the last few years as it has helped get through my own cancer and have made one excellent brilliant friend and got to know many others along the way. We have to outway the bad against the good that is done.
If possible can you let me know date and time of when it is broadcast as away most of June and into July, so will need to get someone to tape it for me.
Jan Edwards (Janbe)
Caroline would love to see you back in chat, know how you feel, but you have been missed, we need good members like you.
Anything which helps with a better understanding of this condition is good,
We made many friends and met up. It is still sad to say that the fakes are still getting thru and causing unrest in chat, but no doubt we will get thru it. It does put genuine people of going into chat. Dont think i really want to listen about it again as i really felt sick about her and candice doing anything like that to cancer patients. Now folk who know me will think june has done well typing this out lol. We will keep our chin up and keep in contact bye to you all and speak to you later take carexx Love June_m
Oh June you have done brilliant to do your little piece, its great to know your one of the good guys, roll on when we meet up in June. Hugs to you Jan xx
June, You did great mate, and well said to You. They are the huge minority, although they can effect us deeply, we are the big majority and we stick together and we get through it together. Wish I could be there with you and Jan, but school terms don't allow it, oh and PPS: What have you done with Casper!!! xx
Thanks to everyone who's commented so far. Reading your responses has reminded me what a strong, supportive community we're all part of and I'm really thankful for that.
There's some more information about the documentary here:
Please do continue to share any thoughts, comments or questions you may have,
On balance - I think it is good that Macmillan supported this programme. I was duped like everyone else.
These people with"Munchausens by Internet" are a challenge to us all - and in their own way need as much help. I wouldn't want to attack them verbally - but hope they can be guided in the direction of the righ psychiatric help.
It's worth noting that Macmillan have added something to the Community Guidelines about this:
http://community.macmillan.org.uk/help_guides/p/guidelines.aspx - scan down for the paragraph headed "Not telling the truth"
It was a sad, sorry episode and affected very many of us. However, I said at the time and I still mean it, I will not allow people like that to destroy my faith in human nature. You guys were all there for me in my darkest days and on my good days..you still are, as this awful illness has not left me alone quite yet.
I am a proud member of the Mac-chatters. There will always be rogue elements in public chatrooms. We just need to be strong enough to remember that not everyone is like that particular person. I am glad that they are now getting the help they need - at the end of the day, they are unwell - as we are or have been, just in a different way.
Thanks to Admin for all that you have done over this - you do a great job!
Agree with all above and some members of this Community have been badly affected, Yes that situation not only duped us, but many other charities and people around the world. What has hurt me more is the fact that I had to explain to my granchildren after they had helped in the Pink Nails Event, that the little girl never actually existed, that is so difficult to do and their wee faces of confusion was not nice. Also I stood up on a platform on the Race For Life Event in my local town and told everyone the story and well now,,,,,,,,,, the aftereffects are shame, embarrassment and how could I have done this. Yes with hindsight it's different, but yes glad this is being brought out and even using the much damaged case, I cannot even bring myself to say their names anymore (A and C). To be so clever and even use photoshot or whatever programme she used to manipulate photos of a living child and let us see them, pulled at our heart strings....................... she has had more than enough attention now and will now no doubt get the attention she does not want, yet the world will still follow the story to try and understand, get educated and safeguard themselves even more. I have added below Symptoms and Warning signs of Munchausen's Syndrome and Munchausen's by Internet. (With this all coming up again; This Community needs to be strong, but no wonder there is so much suspicion now because of what happened. Yes there are still people who come onto this site just to wind others up, demean them at a laugh and call us names, but we are not allowed to be derogatory toward anyone otherwise we may face a warning or be banned from the site. Genuine people with Cancer are not to be discrimated against in any way, but we face it day in and day out every single day. More people are surviving Cancer if it is caught early enough and it is no longer the big fear of Death that it once used to be and that is what should be getting raised and attention more so than people who thrive on gaining attention at others expense.
Munchausen’s syndrome - Symptoms
There are several warning signs that someone may have Munchausen's syndrome. Someone with the condition may:
Patterns of behaviour
There are four main ways that people with Munchausen's syndrome can fake or induce illnesses. These are outlined below.
Munchausen's by internet
A relatively new condition has been labelled Munchausen's by
internet. This is where a person joins an internet support group for
people with a serious health condition, such as cystic fibrosis or
leukaemia, and then claims to have the illness themselves.
While these actions may only be confined to the internet, they can
have an incredibly destructive effect on support groups and online
communities. People with genuine health conditions have reported
feelings of betrayal and anger upon discovering that they have been lied
One expert on Munchausen’s by internet has compiled a list of warning
signs that indicate that someone may be affected by the condition:
The person or persons behind the Charly charade were far more involved in deceiving the Macmillan Site than can be explained away by a supposed mental illness. They went to the trouble of creating other false identiies with elaborate cancer experiences and then exposed them as frauds. I assume this was to reinforce the credibility of the remaining identity, but there may have been other motives, such as financial fraud. I could add a lot more but it would not be helpful. Charles
Thank's Donna - very informative
a rare appearance by me here now but here goes
i was sucked in by this and a subsequent big one
because we care and we want to help
i would love to say that it is worth the suffering and i would take on all the fakes to help one
however i'm not that strong, i will return in time but for now am broken/beat/scarred by these folk
to all who have been here for me thank you, you know who you are
Good Morning Everyone, I have been visiting the Mac site for sometime now. Hoping that i would find people with a similar problem to my own. If my consultants had have been bright enough, they could have diagnosed me with Munchausen's Syndrome a long time ago. The Consultants and GP's that i have been blessed with ,are the governments new weapon ,for keeping down waiting times and list's. Qualifications , Show no interest in patient, Do not investigate patients concerns.
In the event of not being sure what to do, refuse to refer, and whatever happens definitely refuse to
My story is in my profile , I haven't made many comments on the site ,because i have never really fitted in. I have stories collected of wrong diagnosis ,and tumors found blocking airways, But to qualify for a Diagnosis of this nature , You have to be deceased. That is the only time ,that what i have, is going to be found I did tell a consultant of my thoughts, then said ,would it be possible to have such a diagnosis ,without having to be deceased .
I have also found information ,referring to tumors that are not picked up on different scans, some tumors are not picked up on MRI, some are not picked up on CT, a lot are not picked up on Ultra sound, Its amazing, all the technology available ,and cant pick a tumor restricting my Larynx. after several scans it is still there,and a darn site bigger ,than it was when it started end of 2009. Here's the beauty of it you can touch it, But no one has any interest.
The last diagnosis i had was that Head&Neck patients are allways imagineing new lumps.
I had the same Diagnosis from 2 hospitals,A third one would not commit to a conclusion.
This is the first time that i have found on site something to connect with, Its a shame my problem has so many similarities ,to the topic of this column Munchausen's Syndrome, I can definitely say i do not have Munchausen's Syndrome. But i do have a reasonable growth in my neck. Please read my profile ,i didn't dream this one up in 5 minutes, its been growing since end of 2009.
My Cancer experience Head&Neck was handled and treated ,with the best that one could wish for Jan 1995-----Nov 1999. I was under the impression that i had all the treatment that i was entitled to. That is why no further interest was shown.
Carrot - thanks for posting this extra information, I hope other members will see it and find it helpful. I'd also like to remind everyone that whereas an awareness of these behaviours is sensible as a safeguard, it is absolutely essential to remember that if you have any suspicions at all about another member, you should always contact email@example.com in the first instance.
Pyramid - thanks for your comment and for sharing your story. It sounds as though you're worried that your symptoms are not being taken seriously. I think you might benefit from talking to one our cancer nurse specialists. All you need to do is give the support line a ring, it's free, open Monday-Friday from 9am-8pm and is a really fantastic source of impartial, expert information and support. Call them on 0808 808 0000.
Thanks to everyone else who's contributed, please do keep your comments and questions coming.
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