The Hepatitis C Forum
This message is for regular readers of this blog, for those who have arrived here looking for my Hepatitis C Forum through a search engine or a link from another site.
This is an explanation why your link has not gone through to the Forum.
I cannot support or advocate the sudden and radical change of management style and approach to running the Forum implemented this week by its new owners. It is fundamentally different to what we agreed when I passed it over to their safekeeping. So, it’s not the Forum I know and cannot with integrity provide any link to it via my name.
July 15th, 2007 at 1:58 pm
Hi Ron,
I totally sympathise with your situation. You passed the Forum on in good faith, hoping for it to aspire towards the goals and aims set forward by you. Sadly, this has not happenned and the owners have fell short by a wide mark in reproducing the good work you have achieved.
The work that you have done, the lives you have saved, the comfort given to sufferers will forever live in the hearts of the people you helped.
WE wish you all the love and happinness in the world.
Thank you
Laurie
July 15th, 2007 at 4:40 pm
While I was SO sad to see this happen, I wanted you to know that we all still support your decision and agree with you 100%. What you and Ben built may not be the same ever again, but the seeds you sowed are now spreading out and growing in an even wider field. Thank you for your time and efforts over the years - and thanks for providing a safe place for those with hepatitic c to find and give support. What happened was a crime, pure and simple
Continued best wishes to you.
July 15th, 2007 at 6:44 pm
I think you’ve made the right choice Ron, how were you to know the Darkside of a few members would create such a volatile forum.
Your contribution to Hepatitis C awareness & support will never be forgotten. This turn of events is most unfortunate the Dude
July 15th, 2007 at 7:53 pm
Wishing you well in everything you do Ron. You are an inspiration to us all and have helped more people than anyone could know. I understand your reasons for leaving the forum, it feels strange without you there in the background!! Take care and God bless
Me xxx
July 15th, 2007 at 8:27 pm
I’m really disappointed to see this. I hope someone will get things back up & running soon, I certainly hope so as it was a very helpful site for people who may have virtually no support from elsewhere.
If you have been involved in helping to run this site, thank you!
July 15th, 2007 at 9:21 pm
Hi Ron it seems years ago that I first started talking to you when Jonathan had his blog and all the others, we all had a good laugh, we helped each other we listened and we advised each other. We had a good network through our blogs and I broke away for a while back then. As you know I started TX 6 weeks ago and joined your forum it was like a blast from the past all my old mates and loads of new ones I felt at home and at ease on the forum and it was great loads of help and advice when I needed it. I dont know what happened to you and Martin and I dont want to its nothing to do with me, but after the first few weeks on the forum I asked to be deleted because I cant stand arguements, I was gutted leaving the forum but I am not going to let the arguements jepodise my TX, I want my remaining time to be stress free. I am so sorry that all this has happened to you you have helped me loads in the past as has Martin and I have no trouble with either of you and I wish you both well. All the very best for the future, Steve.
July 15th, 2007 at 10:43 pm
Ron, you know my feelings/thoughts. I realize we can’t email you anymore through the forum. How do we contact you.
Denise
July 16th, 2007 at 5:12 am
From your post, Ron, the following are the key words, in referring to the forum and . . . “its new owners. It is fundamentally different to what we agreed when I passed it over to their safekeeping.”
That succintly, I think,sums up the current situation.
Though the forum was a big encouragement both during and after treatment, the quality there has not kept up with the huge leaps in my strength, energy and mental outlook since overcoming Hep C; Our paths (mine and the forum’s) are rapidly diverging.
So then as it was you, Ron, who was the primary reason for originally checking out the forum, it only seems fitting that your departure is (undoubtedly) a harbinger of my future actions.
Thanks, and thank you again for your willingness to be a public (not private) pioneer in this very important area of health.
Though the present circumstances are not easy ones, I’m sure that even better and bolder things lie ahead for you.
Keep on going! As you are undoubtedly are, I too am I’m looking forward to positive, perhaps even great, happenings in the future.
July 16th, 2007 at 10:06 am
Hi Laurie, Denise, Guy and Me
Thank you for your comments and support. Yes, it was a betrayal of our agreement and I had no choice but to say so; it’s also a betrayal of all the membership to suddenly change the whole basis on which the Forum was run.
I hope you will all find another community, a safe place, to continue your journeys with, and without, Hepatitis C.
Wishing you well
Ron
July 16th, 2007 at 10:13 am
Hi Geedeebee
Well Martin is trying to get things back up and running – very much on his own terms which seem to be ‘like it or lump it’. If people choose to join that sort of community they could well get that sort of support.
There are other Forums, Geedeebee, and people will find them and make their choices about what is on offer.
Yes I was involved in running this site – I established it in 2005.
Wishing you well
Ron
July 16th, 2007 at 10:24 am
Hi Steve
What has happened is described in the few sentences above. Part of my disbelief was Martin not anticipating the upset his actions would cause - not just to me but more importantly people on treatment and many members of the Forum. And disbelief he could not find another way to go about things.
Steve, you are right to be focusing on a stress-free treatment. I won’t go on any more about the Forum
I hope you will find positive and helpful support networks for your treatment. And that you have a good outcome.
Wishing you well
Ron
July 16th, 2007 at 10:25 am
Denise
I can be contacted at
ron [AT] ronmetcalfe.com
substitute @ for [AT]
(writing it this way on this page prevents computerbots picking it up as a new email address for spam mail, I am told)
Wishing you well
Ron
July 16th, 2007 at 10:31 am
Hi Walt
Yes, things change and move on. I am pleased that your outcome has revitalised you and given you these choices.
I too have been tempted to make a divergence between me and Hepatitis C but somehow it remains on my agenda even though I no longer have the virus. Not sure this means better and bolder things are on the horizon but we will see.
I wish you well in your future happenings too
Ron
July 16th, 2007 at 11:04 pm
Hello, I seemed to have missed all this, but as someone who has been disillusioned by the tone and content of the forums for some while and spoke my mind, I am also sad that a valuable support resource has been lost. It was clear that many people relied on the spiritual support, interest and care that was provided by individuals to others who were pretty down from time to time. Myself included. It’s nice to know other people give a damn. I can only guess at the reasons this has happened and at the identity of the ego(s) of the protagonist(s), but I sincerely hope that something worthwhile and relevant can rise from the ashes. Good luck to everyone who really did give a damn..
July 17th, 2007 at 7:23 pm
Ron,
I only hope you know what a big help and support you’ve been, without finding you and then your forum first life would have been an awfull lot harder.
All the very best
July 17th, 2007 at 10:48 pm
Hi Pete
I read your comment that your treatment was ended – hope that means successfully. I wish you a good outcome.
Yah, I think it is sad that spiritual support, interest and care that was provided before on the Forum will have been lost – certainly a chaotic and unhappy place at the moment. Perhaps it will settle down. I hope so the sake of those on treatment – they’ve got enough to contend with at the moment. We’ll see who gives a damn once the shouting stops.
Wishing you well
Ron
July 17th, 2007 at 10:56 pm
Steve
Many thanks for saying those things. All the best to you and your family.
Wishing you well
Ron
July 18th, 2007 at 3:30 am
Hi Ron,
Nothing that happens from here on out will tarnish your reputation and the good work that you have done establishing the global HCV community.
It seems like decades, but it’s only been a few years since I was nearing my treatment end and I stumbled upon your then new blog. It is sad now, sort of bittersweet that era is ended and the forum as we knew it will never be again.
I wish you the very best and I look forward to working with you to continue educating and supporting those going through the very long and very difficult HCV journey.
Be well!
nadine
July 18th, 2007 at 3:40 am
Hi Nadine
I am sure that all of us, over time, will accrue the reputation we deserve in this life. What comes around, goes around.
Yes, it feels like you and I have travelled on the HepC journey along time together. And I am sure we will travel together a while longer yet.
It is good to have companions on the way.
Wishing you well
Ron
July 18th, 2007 at 8:36 am
Ron,
I’m completely gobsmacked! I wandered over to your blog this evening to see how you were doing, and saw this post about the forum. I then spent an hour trying to piece together what on earth was going on.
Good God what a truly heartbreaking turn of events! As angry and disappointed as I am (and as much as I’d like to take a shot at Martin, I won’t because I see no value in it), I can’t even imagine the depth of what you must be feeling. I had already pretty much soured on the forum during JohnBoy’s last “incident” (no judgement intended against JB, merely a point of reference). Sadly, it seems like forums like this inevitably arrive at this sort of chaos sooner or later. I believe I mentioned in my first or second post, upon joining, how refreshing to see a functional forum where support was the prevailing spirit and there was a surprising lack of flaming, hostility, didactic and arrogant blather (okay, so maybe that was a shot, after all), etc. It’s obvious the forum has transformed into something much uglier and more unfortunate than it once was.
I add my voice to the others in expressing gratitude for your efforts to take the spark of your own personal crisis and build a community. I’ve made friends through the forum with whom I fully intend to keep in touch (you included), but I will otherwise quietly fade out of that arena.
Be well,
Chris
July 18th, 2007 at 8:40 am
Hi Chris
I won’t pretend I wasn’t just a bit gobsmacked too. And still puzzled – what’s it all been about, really??
Thank you for your kind comments.
I am delighted to read news of your continued SVR on your blog. May it continue.
Wishing you well
Ron
July 18th, 2007 at 6:38 pm
Ron
I hope that we will keep in contact as I will continue to need a friendly face throughout the waiting period to SVR.
I feel as betrayed as you must and I know that the Forum will never be the same again as long as Nero is running the show.
I came to a place that helped immensely by educating me on diagnosis and at a time when I was ‘bemused’; provided support and advice during treatment; and……… well look what’s happened post treatment!
I am desperate for SVR as I’m not sure how I would fare going another 12 rounds with the beast and no one in my corner!
I feel utterly disgusted with your treatment. Why is it the good that get p**sed on?
I can only say thank you for your help in te past and hopefully the future.
Genuinely my best wishes.
BB
July 18th, 2007 at 7:05 pm
Hi Ben
I am certain we will keep in contact.
And I wish you well for your SVR – you deserve to achieve a good outcome from the HepC treatment voyage. Don’t be desperate though – wasted energy. I look forward to hearing your news of a good outcome.
Talk soon.
Wishing you well
Ron
July 19th, 2007 at 2:48 am
What is to say. One can never know how deep envy goes or the need to believe we are right and others wrong. I am so grateful that you choose to do something positive that could benefit so many. It is a shame that those who come to the forum now will not know you or others who are no longer there due to what has gone down. Betrayal is a deep wound we never really get rid of it. Perhaps it makes us wiser but at such a cost.
Much success in all your endeavors
Denise
July 19th, 2007 at 9:16 am
Hi Denise
I’m getting to the stage of not wanting to be known, or any more limelight – not if it provokes more envy. That is some of the wisdom I’ve got from the experience. I have no wish for people to be envious of me.
Nonetheless I will continue to do something positive for Hepatitis C awareness.
Wishing you well
Ron
July 19th, 2007 at 10:02 am
Ron. I agree with your decision to allow the forum to free fall into a new shape without you attaching your name.
I found the past few weeks , when I looked in to the posts, to be typical of what I had found in non communication with tech.
I know something has changed but hope that good, in the spirit of your original mission, will come from this storm.
Best wishes.
John.
July 19th, 2007 at 3:18 pm
Hi John
Good to hear from you and thank you for your comments.
I have had so much feedback that I know good has come from my original mission. All things change – and evolve. So will the Forum. For the sake of people who still need the support and information about living with HepC, I hope the revolution can settle and some form of good can survive.
Wishing you well
Ron
July 20th, 2007 at 11:34 pm
Sorry to hear what has happened. I am still confused. The forum was really helpful to me, where are any other good ones?
Best of luck to all.
Scott
July 21st, 2007 at 12:21 am
Hi Ron,
I also stumbled on your blog when I was diagnosed with Hep C and was looking for info and doing my research. There’s lots of medical stuff out there to read but it was reading the blogs and forums of folks in the same situation that was most comforting to me.
In fact, I came back to the forum tonight to introduce my husband Doug who is starting treatment on Friday. I finished 24 weeks tx in January and my 6 months post treatment test clean.
All the best to you Ron, I’ll be checking your blog regularly so it’s not good-bye or anything. But thanks so much for everything and take good care.
Yours truly,
Annette
July 21st, 2007 at 10:13 am
Hi Scott
I too am a bit confused - was that necessary to achieve an agenda?
It was the only Forum I ever frequented so I’m not in a good position to say. For the people out looking and needing one, I certainly hope so.
Wishing you well
Ron
July 22nd, 2007 at 1:02 am
Ron,
I also remember when you organized this forum. Thank you so much for that and for your blog. I haven’t been around it a lot in the past two years, but am planning another go at treatment in September (hopefully, the side effects will be more manageable this time and I’ll be able to make it through the full tx).
So I was surprised to click on the forum link and find that problems had arisen. I’m not certain of the details; I’m not certain I want to *know* the details. I noticed when I went to the “new” forum that it’s now called the UK Hep C Forum, which doesn’t exactly make me feel welcome, not being from the UK.
Anyway, thanks again for all you’ve done.
Peter
July 22nd, 2007 at 1:22 am
Peter
I hope that second time round will bring a more successful outcome for you. And that the previous time has left you experience you can draw on.
I too am not sure I want to know all the “details” of the problems in the background.
For the sake of people like you needing and wanting support through treatment I hope the “new” Forum settles down and gets its act together.
Wishing you well
Ron
July 22nd, 2007 at 4:36 am
Hi Ron, thank you for personally responding to my questions reguarding treatment. I think you are an inspiration to me as well as so many others. I really neede the help and you responded so quickly. Thank you for all of your work reguarding Hep C! I know I am better because of your kindness! Sincerely, Cin
July 22nd, 2007 at 10:25 am
Hi Cindy
Thank you for taking the time to write and say that - I appreciate it.
Wishing you well
Ron
July 24th, 2007 at 5:15 pm
Ron…
I’ve been gone a while - TX and computer problems on my end.
I will miss you here - if there is a “here”? - you understand.
A serious and heartfelt thanks from me.
Health, Love, and Luck… Don… aka Aquaman
July 28th, 2007 at 7:35 pm
Hi Ron I hope you have seen my posts in other places but just wanted to be sure you knew how sad and disappointed I am about what happened - I never join forum’s usually, but yours was different, and helped me more than I can tell you during the horrible time I had on tx. It was, as many have said, a literal lifeline, and I grieve for it. In the back of my mind I harbour a hope that it might change again, but I don’t hold out much hope - I have cancelled my membership in any case. Thank you anyway for all your work on creating something special - Much love and gratitude, Michaela
July 30th, 2007 at 9:57 am
Hi Don and Michaela
Thanks for your words and thoughts.
Wishing you well
Ron
August 7th, 2007 at 2:43 pm
this may seem like a stupid question im sure, but my mother has Hep C and i just want to know if this will take any years off of her life.. please email me and let me know
August 8th, 2007 at 10:08 am
Hi Brad
An email is on it’s way
Wishing you well
Ron
August 11th, 2007 at 4:28 pm
Hi Ron,
Very sorry to see the deterioration of what was a wonderful resource for so many of us.
Congratulations on continued SVR (me too!), and all best wishes to you and your family,
Sue
August 11th, 2007 at 7:06 pm
Hi Sue
Congratulations to you too on the continued SVR.
Best wishes to you and yours
Ron
August 12th, 2007 at 2:21 am
Hello Ron
Well better late than never -didn’t join your forum till my more than rocky post tx period!
The sad reality of this is that I truly believe that the tx and post turbulence would have been less severe if I’d joined sooner ‘even sadder reality is that if I’d taken a look that night I wouldn’t have considered tx as I’d been told it caused brain damage .Martin’Carol this has come out harsher and ruder than I intended but were you really thinking about hep c?
I am clear of hcv ;the journey to this point was horrific but it was worth making and I think worth telling.I had enough of being treated like a lepper with hcv never mind with out.
Things don’t feel “inclusive” which is sad as this damn virus demonstrates that it’s fully “inclusive”
sarah
August 13th, 2007 at 9:09 am
Hi Sarah
Sorry you’ve had such a rough time of it.
Focus on you and getting what you need.
Wishing you well
Ron
August 25th, 2007 at 3:09 am
hello ron’
i have not been around 4 a while, i really can not beleive what has happened to the forum. this was the only place i found comfort thats what you get for stayin away!
August 27th, 2007 at 7:01 pm
Hi francessca
Well, I guess everything in life changes…. even us. I hope you are able to find some comfort for yourself.
Wishing you well
Ron
August 29th, 2007 at 3:02 pm
I have a question, I was postive for >20 antibodies on a normal chemistry test. So I went back for more extensive testing. I think one was genone type testing. I was cleared as negative. Now I whatand had another physical and they said I was postive again. This is all in the last month? What does this mean?
scared in MD
August 29th, 2007 at 7:30 pm
Hi John
You don’t say where you were tested - a hospital? Sadly, it has been known that blood samples get lost or results are incorrect.
Personally I would ask for another PCR test - somewhere else. That is, your GP surgery if it was a hospital - or vice versa. Your local GUM clinic is another place which will do tests - and anonymously.
That way you can double check the results. There are a percentage of HCV cases which clear spontaneously early on - is that happening? I would certainly pursue more testing.
Wishing you well
Ron
September 1st, 2007 at 2:30 pm
Ron
Jeez see what happens when you stay away. This really saddens me.
I lived on your forum and MedHelp during my Tx. I owe you so much and to find out you are no longer a part is difficult to believe.
All the Best
CS
September 11th, 2007 at 12:14 pm
so sorry tosee you gone, am nearly at the finish line and would have dearly loved a forum as dedicated as yours was to put things to…alas not to be..if you can give me the nsame of anything good out there that would be great.
Best wishes
Sacha
September 11th, 2007 at 7:22 pm
Hi CS & Sacha
I too was saddened and upset. Sometimes things happen in life for a reason. And we all need to accept change and move on. I hope I have now.
I wish you both well in your changes and that good health visits and remains with you.
Ron
September 18th, 2007 at 7:41 am
Hi,
I am alamgir hossain my age is 30 years I am faceing my bad luck that recently,hapatites c vires attaced me and I am very poor and jobless I donot have any money in this case I donot take any tretment so I need help If I get free tretment for Hapatities c then I will be happy
September 19th, 2007 at 6:43 pm
Hi Alamgir
I am really sorry to read your comments - bad enough getting HepC virus but uncertainty about treatment on top is really rough. You don’t say what country you are in so it’s difficult to know what to say about getting yourself some medical help.
Nonetheless, I wishing you well
Ron
September 20th, 2007 at 1:23 pm
Hi Ron,
Well, I’m 2 years post Tx and still the virus is undetectable. It seems an age ago when we met in the ‘departure lounge’ doesnt it? Sorry about what happened with the forum after all the stirling work that you and Ben did but hey ho. thats the way of the world, nothng lasts forever does it? I am waiting for a hip replacement operation (I’m convinced having the virus for so long is the cause of the deterioration of the joint) and am thinking of starting posting to my blog again. I see that you are answering comments and wondered if you are thinking of posting again too? (oh, go on, you know you want to). What’s your life like after treatment are you different, how has it affected your state of mind, outlook or enjoyment of life? I’d love to know and I’m sure others would too. Hope you and your family are all well and happy. Lots of love to you
Wendy
September 20th, 2007 at 6:39 pm
Hi Wendy
Good to hear from you. And I hope your hip replacement operation goes well - keep us posted. Yes, the Forum - as you say, nothing lasts forever.
I am in a quandary about what to do with my blog - my treatment is done and I no longer have Hepatitis C. Do I have anything of relevance and interest to say? I wonder….
I will stop by and see what you have decided on your blog though!
Wishing you well
Ron
September 24th, 2007 at 10:02 pm
hi ron I am confused but that is normal for me all I know is when I was on my TX your site helped me to keep going. I felt so alone till I found your forum. I am feeling a bit lost again. VOICES is there but I cant post not sure why. and my bookmark to my UK suport no page found. I feel a real loss. I am up for my one year post lab and real nervious. but what ever happens i will be ok. i wish i had a place to go too talk about my feelings. i also miss supporting if others, as i know its not easy. but i cant even do that uggg…pease to you. thank you for all your help. you kept me going…
tina
September 25th, 2007 at 8:32 pm
Hi Tina
First and foremost I am really pleased to hear you have been clear for a year. Statistically I understand there is less than 1% chance of the virus returning - so I sincerely hope you are one of the 99%. After all, you have survived it all so far and achieved clearance.
Yes, I too miss the community where there was sharing and support - but things move on and change. I hope you can find another place for yourself.
Wishing you well
Ron
November 6th, 2007 at 7:22 pm
Hello Ron
Sadly shocked to discover the demise of the forum. Just thought I’d have a look for old times sake and this popped up.
I can only echo the comments of others, it was a wonderful resource and I wish I’d found it while I was on Tx instead of just after. I think I was 47th to join in 2004. So much information and support was there, thank you for creating what was a refuge for many.
Still clear 3 years on but treatment left its mark.
All good wishes for your continued health,
Shirley (survivor)
November 6th, 2007 at 8:37 pm
Hi Shirley
…….well the Forum still goes on in its current Forum - it’s just not the Forum you and I recall. But everything in life changes…..
Glad to hear you continue to be well
Ron