Living Without HepC

I had a very odd experience recently - I didn’t where to put myself or what to say. That in itself is unusual for me.

I took a potential business client out to lunch. A proper business lunch – attentive waiter service, menu with the provenance of the food clearly listed, etc. When it came to discussing the wine list I pointed out to my guest that, as he had seen on my CV, I have had HepC and now try to look after my liver by drinking only occasionally. (Yes I do list HepC on my CV as an explanation for only working part-time over that period and because I insist on being upfront about it.)

He replied that he had once had a letter from the National Blood Service after giving blood to say his donation hadn’t been accepted due to hepatitis. He added this was years ago but he’d never had a blood test since then. Immediately I was thinking, I know a number of people whose HepC was diagnosed from a letter from the National Blood Service. So I hear alarm bells going off in my head. He said he wasn’t sure what type of hepatitis it was but he felt well so it must have passed.

Lots of things were going through my mind. I felt quite shocked that someone would get a letter like that and not take the advice of getting further tests. I wanted to confront and challenge that one. I also felt acutely aware that this is someone I hardly know – certainly not someone I know well enough to be challenging self-care behaviours or giving them health advice. This is a potential business client and our relationship is fairly formal.

I also thought I don’t want to be the person to tackle the very real possibility that he could be ill and not know it. That is not my place just because I’ve had the virus, done the treatment, got the t-shirt and wrote the blog. But I could not leave the matter without saying anything.

All I could muster was a rather low-key “it could be a good idea to get a blood test”. When he asked me the symptoms of HepC and I said generalised fatigue, stomach or digestive problems, feelings of malaise or unwellness were amongst a diverse range of symptoms, he nodded and said he had some of those. They had offered some counselling he recalled. He added maybe he should get a test sometime. I wanted to say, “YES, sometime this week actually would be a good idea”. But again I felt constrained that this is not my place or the sort of relationship I have with this person. But I didn’t. I just again said it would be a good idea to get a blood test.

Since then I have felt I ought to have said more. Even as I write this I can feel this sense of responsibility, knowing what I do about HepC. However, if someone does not take the advice given to them in a letter from the National Blood Service, or chooses to deny its significance, should I be pressing them, giving them more advice, penetrating their armour of denial? Is that for me to do?

Just now I have been looking at the NBS website and seen their policy guidance on confirmed positive microbiological markers such as HepC. The NBS has a responsibility to inform donors confirmed positive, to contact them by letter and to follow up non-responses through TRACELINE to establish the name of the GP and request they contact the donor. There is quite a lot of detailed procedure and protocol in place. So I can see that clearly I do not have to feel responsible – the NBS is.

I also read on their site that their positive antibody test result does not necessarily indicate continuing infection with the hepatitis C virus.

So, I don’t know what happened in the case of my lunch guest. I am pleased to realise it really is not my business – or my responsibility to confront. I hope for his sake that he is well. But I now know I don’t have to keep weighing up if I have done the right thing. And I feel relieved about that.

Once again I find this living without HepC very odd – clear of the virus but not entirely clear of it in my life.

The New York Times has yesterday published articles about Ghostnet – a vast electronic spying operation that has infiltrated computers and has stolen documents from hundreds of government and private offices around the world – including those of the Dalai Lama.
I quote from that article:

The researchers at the University of Toronto, had been asked by the office of the Dalai Lama, the exiled Tibetan leader whom China regularly denounces, to examine its computers for signs of malicious software, or malware.

Their sleuthing opened a window into a broader operation that, in less than two years, has infiltrated at least 1,295 computers in 103 countries, including many belonging to embassies, foreign ministries and other government offices, as well as the Dalai Lama’s Tibetan exile centers in India, Brussels, London and New York.

The researchers, who have a record of detecting computer espionage, said they believed that in addition to the spying on the Dalai Lama, the system, which they called GhostNet, was focused on the governments of South Asian and Southeast Asian countries.

The newly reported spying operation is by far the largest to come to light in terms of countries affected.
This is also believed to be the first time researchers have been able to expose the workings of a computer system used in an intrusion of this magnitude.

Still going strong, the operation continues to invade and monitor more than a dozen new computers a week, the researchers said in their report, “Tracking ‘GhostNet’: Investigating a Cyber Espionage Network.” They said they had found no evidence that United States government offices had been infiltrated, although a NATO computer was monitored by the spies for half a day and computers of the Indian Embassy in Washington were infiltrated.

Disturbing enough to hear about this type of skulduggery, it is even more disturbing to learn of the implications of the capabilities of this malware for businesses and organisations in general.

The malware is remarkable both for its sweep — in computer jargon, it has not been merely “phishing” for random consumers’ information, but “whaling” for particular important targets — and for its Big Brother-style capacities. It can, for example, turn on the camera and audio-recording functions of an infected computer, enabling monitors to see and hear what goes on in a room. The investigators say they do not know if this facet has been employed.

The researchers were able to monitor the commands given to infected computers and to see the names of documents retrieved by the spies, but in most cases the contents of the stolen files have not been determined. Working with the Tibetans, however, the researchers found that specific correspondence had been stolen and that the intruders had gained control of the electronic mail server computers of the Dalai Lama’s organization.

The electronic spy game has had at least some real-world impact, they said. For example, they said, after an e-mail invitation was sent by the Dalai Lama’s office to a foreign diplomat, the Chinese government made a call to the diplomat discouraging a visit. And a woman working for a group making Internet contacts between Tibetan exiles and Chinese citizens was stopped by Chinese intelligence officers on her way back to Tibet, shown transcripts of her online conversations and warned to stop her political activities.

The Toronto researchers said they had notified international law enforcement agencies of the spying operation, which in their view exposed basic shortcomings in the legal structure of cyberspace. The F.B.I. declined to comment on the operation.

At the same time, two computer researchers at Cambridge University in Britain who worked on the part of the investigation related to the Tibetans, are releasing an independent report. They do fault China, and they warned that other hackers could adopt the tactics used in the malware operation.

It is interesting that the Dalai Lama and his activities are of such concern that they need to be infiltrated, tracked and undermined. Clearly he is of much greater import than the dismissive statements made by the Chinese – and to some extent the British government who recently formally (and, in my opinion, shamefully) recognised the supremacy of China in Tibet.

There is no integrity in denouncing this man who espouses peaceful protest and good wishes to his fellow man by saying he incites violence and creating other fictions about him. The use of computer malware underlines this lack of integrity and adds a layer of immorality to the campaign against him.

Now the polarisation going on around His Holiness extends further into our society.

We learn that this malware can, for example, turn on the camera and audio-recording functions of an infected computer, enabling monitors to see and hear what goes on in a room.

The case in point is the Dalai Lama but obviously the implications are enormous if launched against businesses and organisations. At a time when the UK government has invested so much in creating electronic records and databases across national organisations, requiring us increasingly to make electronic payments of tax and other payments it is chilling to think about the vulnerabilities we are building into our society.

And how easy it is for immorality and illegality to infiltrate the very fabric of it - in ways which are so very insidiously unknown and mysterious to the vast majority of us.

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

Wow - and today I have learned even more about this film and why I don’t really like it very much.

I have just watched the whole film made by Jonathan Gems on HepC - whose preview I referred to in yesterday’s comments. Although the film makes many apt and accurate points about the state of our government’s response to HepC, overall I found it a negative and alarmist piece of work.

It is true the UK government’s response to Hepatitis C has been slow, short on direction and woefully inadequate on planning. It is likely that that the Department of Health doesn’t want to face the possibility that Hepatitis C is a costly and wide-spread epidemic. I wouldn’t disagree with Mr Gem’s analysis on that front. Hepatitis C is a horrible disease that needs to be taken seriously not swept under the carpet.

I would disagree with his judgement on using the cinematic technique of bombarding the DoH with letters. As none of the replies to his letters could be filmed for legal reasons the whole thing bordered on just haranguing. And I ended up thinking that was his style on the whole issue of Hepatitis C really.

It is apparent that Mr Gems has had a series of very unpleasant experiences with Hepatitis C. I am guessing all of us who have had it would say the same. And, yes, there is a value in sharing one’s experience – however, Mr Gems forgets to tell his viewers that it is only his experience not the general rule.

He spoke of having a liver biopsy, for example. My experience of having a liver biopsy was not pleasant but very different than his – and at the same hospital I might add. I’m uncomfortable he has left viewers with the impression it is so brutal it causes “out of body” shock, so painful it requires more than paracetamol and evokes indifference from staff who left him to suffer for 6 hours. Actually patients are told in advance they will be kept for 6 hours under observation for complications. The needle I had was not particularly painful and I wasn’t left to suffer. I was checked regularly by nursing staff who gave me plenty of sympathy and paracetamol for my pains. As I’ve said, not a pleasant experience but I think Mr Gem’s tale will clearly frighten someone off what can be a necessary and useful procedure in assessing the state of one’s health.

He is also contradictory in telling his own story. At one point he says he told a doctor he didn’t know how he got HepC, then later rather factually wrote he got it through gum surgery in 1980’s.

Time and again Mr Gem’s own experiences are generalised to represent the situation for everyone with Hepatitis C.

I feel very strongly that if any of us decides to publicly help educate others about this virus – particularly others who also have it, that we have a responsibility to present a fair representation of the situation. Not just our gripes about the way we see things. “No research being carried out on HepC”. “No palliative care for HepC”. “HepC causes brain haemorrhages” (that robbed us of Anita Roddick). By the time it is diagnosed HepC has caused “organ damage - including brain damage”. I don’t believe these statements are factually true but I will acknowledge that is only my view or belief. Mr Gems presents all these as facts. For the general public and newly diagnosed to absorb and worry over. As if Hepc isn’t frightening enough without giving it a further negative spin.

It is an interesting perspective to state that those most likely to get infected by Hepatitis C are surgeons, dentists, paramedics, nurses and doctors (and later in the film, firefighters and manicurists are added to the list). However to say that any health professionals who test positive are automatically fired, so therefore they keep quiet and hence the disease spreads is a somewhat distorted logic. And it is not factually true that medical staff are fired from their jobs. Through my experience of this blog I have been in contact with dozens of medical and clinical staff who retain their careers despite their HepC status. Yes, they no longer work in vulnerable roles but they still work.

Yesterday I said I learned a few new things about Hepatitis C. Yes, that’s true. I didn’t know it was so different from Hepatitis A & B. I didn’t know it is a nanovirus. I also didn’t know that 38 million people in China carry the disease. So this film can add something to people’s knowledge about the disease.

However, I am struck how much personal anger drives the energy and perspective on display here. And drives the very demanding absolute solution that there should be mandatory testing of the whole nation now before it’s too late.

There are other issues I could comment on here but no doubt you are becoming as weary of hearing about this film as I am writing about it. One question I was left with though - why does Dr Oliver Thatcher not have a shirt on as he outlines the news about the various hepatitis’ ?

Wow - I have learned several things I didn’t know about Hepatitis C just watching this 5 minute preview of a film by Jonathan Gems.

Watch Me Hep C and the NHS by Jonathan Gems in Pink Onion Films  |  View More Free Videos Online at Veoh.com

There’s a full length version of this film at the Pink Onion Films channel on Veoh.com. You will need to download their Veoh Web Player to see the full length versions.

When I have finished the download and viewed this and another film by Paul Desmond I will comment further.