Living Without HepC

Email from Ben who is speaking at a social media event SXSW Interactive currently being held in Austin Texas

On 14 Mar 2009, at 18:23, Ben Metcalfe wrote:

This link is being referenced a lot here at SxSW, and I thought a lot of the observations were similar to your experiences with the HepC forum.

http://www.kuro5hin.org/story/2009/3/12/33338/3000

Great to see you twittering, by the way!

Lots of love,
B

Hiya Ben

This article don’t say much – and takes a wordy length of time to do it – in a pseudo academic sort of way. He’s right about Shirky. Complete ass and self promoted expert. His inept grasp of Bion’s unconscious behaviours in groups made me laugh. And the man is paid to pontificate about it all.

I can see my approach is completely on the wrong track.

Reminder to self:
use more words to say it
quote as many other sites on the net as possible
inform everyone what an expert I really am

Thanks for the heads-up on the article. Will probably blog on it when I digest all the long words and big sentences. You’re right – it does remind me alot about my experiences with The Hepatitis C Forum.

I keep twittering and avoiding asking myself “why?” but inevitably it will occur to me to do so.

Lots of love
d
xx

Follow my Twitter at http://twitter.com/ronmetcalfe

Spotted on a roundabout near Vauxhall Station London

Back in the days when it did affect me, I never saw anything like this around town. So well done HepC Trust for persuading Clear Channel advertising to sponsor the message.

Do any of you bloggers have trouble with spam?

Since Christmas I have been bombarded with ‘hits’ from a number of rogue sites (they don’t exist), each time leaving a record of their name in the Last Referrers or Top Referrers lists on the Statistics page of the blog – which you reach when you click on ‘Some Viewing Statistics’

You won’t see any now, because every day I delete referrers with obscure or sexually explicit names. Trouble is they seem to come up on google searches when the culprits do a search on their particular name.

I can’t see what is in it for spammers to do this! They don’t seem to achieve anything tangible. Yes, it inconveniences me and the thousands of others they are spamming but I just delete them as they come in -part of the housekeeping as I see it.

But today marks the beginning of a new spamming phenomenon. Between 8 am this morning and 1:30 I received 18 Comments posted in various places throughout my blog – all allegedly coming from an online casino with the name texas in it. The messages are all platitudes of this sort:

If justice and righteousness perish, human life would no longer have any value in the world. by internet poker

I know from the information I receive with the comment that the message hasn’t originated with the casino so they will feel equally aggrieved by the work of the spammers.

So if anyone has any information, experience or solutions to this I would be pleased to hear from you (unless you are the Spammer in which case I don’t want to hear from you again). And if you come across a comment that just doesn’t really seem to belong in this blog – chances are it’s spam that I have got rid of yet.

It is good to see that one of the major daily newspapers, The Independent, has given half a page today, albeit on page 6, to the “hidden epidemic” of Hepatitis C.

In an article headed “Hidden Epidemic Of Hepatitis C Threatens To Overwhelm NHS With 500,000 Liver Patients”, the paper states:

More than 500,000 people in the UK may be infected with the virus, a study by doctors at Southampton University has found. Experts said that the government figure of 250,000 cases was a “gross underestimate”, and warned that the NHS was facing a time-bomb of potentially fatal liver disease as a result of ministerial failures to tackle the problem.

Professor Rosenberg, a liver expert from Southampton University, said:

“The problem is that many people look at these risks and don’t think it applies to them. But there is a huge cohort of people who 20 or 30 years ago may have dabbled in drugs, even just once at a party, who could be infected.
“They are judges, businessmen, lawyers. They are the ones who could have had the virus for 20 or 30 years now and could soon start developing end-stage liver disease.”

The article also states:

Out of the estimated 500,000 infections, just 60,000 people have been diagnosed and only 3,000 are receiving treatment.

And ends by saying:

Public health experts are concerned that the stigma surrounding hepatitis C and a widespread assumption that it is a “low-life” disease discourage people from seeking a test.

And these experts recommend a campaign on the scale of the HIV/Aids health warnings in the 1980s to publicise the threat.

Charles Gore, of The Hepatitis C Trust, has not missed an opportunity:

“There is a firestorm that is starting to brew in hepatitis C and nothing is being done about it. The Government promised a big campaign but we have seen very little action. I am extremely disappointed, and very concerned that we are going to be engulfed by an epidemic of liver disease very soon.”

(The article can be read in full at The Independent Online Edition.)

None of the information is new – I referred to the estimates of 500,000 undiagnosed cases when I wrote on 9 December (”It Does make Me Cross”)
about the stigma around HepC. (But it’s good to be able to identify the source of the information as Professor Rosenberg of Southampton.)

I am pleased, however, to see some recognition that HepC is not just an active drug users’ disease – and to see an acknowledgement that it has been stigmatised as a “low-life” disease. I am sure I speak for others when I say, I have had to deal with my own raging anger that I have a chronic disease, and my own fears that it could be life threatening, so I now don’t want to have to deal with stigma and discrimination from society at large! Hepatitis C is no more, nor less, ‘respectable’ than any of the other diseases, such as cancer, which our modern day lifestyle has brought us. And none of us, including active drug users, deserve discrimination or stigma.

Is this a bit of momentum building in the awareness of the media and the public about Hepatitis C at last?

My recent posting about vitamins (Week 12 – Monday) prompted several comments from readers. So I went back to have another look at what I said.

I reported I easily get short of breath – and Mynurse pointed out my haemoglobins are low, so I am clinically anaemic. I asked if I exercise more will this help? No, I will just be more out-of-breath. Should I take vitamin supplements like iron if I’m anaemic? No, the interactions between the vitamins and the interferon becomes complicated – especially iron. So what can I do about being anaemic? Nothing, short of stopping the ribavirin. (This is not an option!!) Actually Mynurse pointed out it is only because of the drugs I am anaemic and this will continue (with her monitoring it closely) until I stop the medication. So, I am anaemic and will continue to be short of breath – no need for any intervention unless I get chest pains (which I don’t – it’s a much milder response than that).

I think it is a case of “I know what I meant when I wrote that” rather than it being a comprehensible statement. In fact I think I have been sloppy in the distinction between vitamins, vitamin supplements and minerals. Perhaps I could blame the “brain-fog” or fatigue on the day I wrote this – and possibly it’s lack of knowledge or confusion on my part. Maybe they shouldn’t let me loose on a keyboard at all….

So, in response to some of the comments or confusion I may have caused:

I know vitamins are good for us and I believe my diet is a good source. For example, we regularly eat organic spinach and I think this is a good source of iron, making supplements unnecessary. Mynurse was not saying vitamins are not good for us!

Because I concentrate on maintaining a liver-friendly diet I haven’t needed to take vitamin supplements – but was wondering on that day if doing so could improve my blood results.

Introducing iron into the discussion seems to have been a real red herring! I have no idea now why I asked about it specifically when I was meaning to talk about vitamin supplements generally.

Buzz Trexler, who writes a blog on his HepC treatment called Gathering Wool: Tales of a Black Sheep Living in Post-Christian America has pointed out that excessive iron in the liver can lead to a disease called hemochromatosis. I know two members of my HepC Support Group are co-infected with this condition and HepC – apparently a rare occurrence in the UK. So I know there is wariness about recommending iron during treatment.

From my conversation with Mynurse I realised that the anaemia is induced by the Ribavirin and won’t really resolve until I finish the medication.

On the issue of feeling breathless, I wanted to check out with Mynurse – if I am feeling breathless, will increased exercise improve my breathing? From my conversation with her I realised the breathlessness comes from the meds and will not really improve until I stop taking them. So, I know that exercise is good for me and that increasing my exercise at the moment, however, will not stop the breathlessness.

There, I hope I have written that more clearly – and that I haven’t misguidedly and inadvertently made any controversial statements in the process!!