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Date: 23.02.2015
From: Dominic Reynolds

Subject: False hope: journalist's query

Hi there

I'm a reporter at Channel 5 News in London and I wonder if someone on Arthritis Forum could offer me some guidance.

It's been pointed out to me that forums for people with chronic conditions are vulnerable to being targeted by aggressive marketers.

The theory is that on these forums, people have a high level of trust in their fellow posters, and that means that someone wanting to make a quick buck can pose as a sufferer, before recommending a particular course of treatment, apparently with miraculous results. It seems to me that the more desperate a person is, the more likely they could be to believe and/or part with money.

I imagine that the offer of false hope would be an especially difficult thing to bear.

Clearly Arthritis Forum is a community which is well-policed and well-run, but perhaps you've heard of something similar taking place elsewhere? If so, I'd be glad to be put in contact with anyone who may have been caught out.

Feel free to drop me an email at And please do pass this on appropriately.

Very best wishes
Dominic Reynolds
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Date: 23.02.2015
From: Chris Parkinson

Subject: Re: False hope: journalist's query

Most things on the internet are trying to manipulate you in some way or another.

Due the the defamation act of 2013 you can now post defamatory comments and the person you libel has very little recourse. Why has this come about? Because internet forums originally set up by enthusiasts which have succeeded and now have high traffic are now being bought up by big money. So big money has managed to get the law changed. Why?

Because the defamatory comments are picked up by google and end up on their search pages which drives people to the forums, driving page impressions for banner adverts.

Most forums for disease sufferers are also run by big money and my suspicion is that big pharma are financing these big, flashy forums to make sure that anything remotely "alternative" or "natural" which might pose a challenge to orthodox medicine is swiftly deleted.

Could you be sent by the orthodox establishment/big pharma on a fishing expedition to one of the few forums which do not aggressively delete posts about alternative therapies to try to blanket smear all alternative therapies by finding one or two examples of abuse and then exaggerating them out of all proportion?

I suggest a better subject for investigation would be how effective drug therapy is for disease sufferers and what the side effects of the drugs are.

You might start by reading the forums carefully and taking note of innumerable, desperate cries for help of people who have been given every drug there is for their condition with no lasting improvement and an inevitable spiral into invalidism. But if you did a program on that subject you would never work again would you?

Cheers Chris
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Date: 23.02.2015
From: Sean

Subject: Re: False hope: journalist's query

Hi Dominic

It will make a good story and some forums are policed very strictly. I have views that I would like to share with you.

This forum does appear to be non-affiliated and does not strongly police people talking about suggested alternative approaches - especially where people don't just pop in and promote something.

I think most people are strong enough not to be mislead by very silly claims or blatant marketting. There are also enough truly good external websites where things can be corroborated.

Other forums such as and especially ArthritisCare and Research jump on anyone posting alternative advice - as Chris mentioned above!

It is interesting that you have used the phrase "false hope" as my id was blocked by a AC moderator for giving people false hope by suggesting that diet can impact arthritis - I rejoined under a new name and take part in a more subtle way - but the strange thing is that the people that got "shirty" before now seem to welcome the information.

I don't think the different forms of arthritis are easy to treat or have quick fixes, but I do think that there is too much overlooked - I also have my concerns regarding the sponsorship and high-level affiliations of some of the larger forums.

For me the irony is that the two years since my AC id was stopped - the direction of research into the role of gut bacteria and diet on autoimmune disease has exploded - however I strongly believe that it will take more than drug funded university research and profit driven drug company research to bottom out the full extent of this.

Are you brave enough for that reporting challenge?

My view given the evidence would be is that this needs to be in more places than just popping up and misreported in the Daily Mail every 2 years!

For me the real story isn't forum poster misleading people or giving people false hope - it is the suppression of information under that wonderful phrase of "Evidence Based Medicine" - and perhaps some of the underhand tactics suggested by Chris.

I'm a bit more optimistic than I was a few years ago that we will be seeing a meeting of minds between holistic health practice and Evidence Based Medicine at some point - unfortunately the need for this coming together will arise out of a lack of money for the NHS to treat dementia, diabetes and other autoimmune diseases like arthritis.

If you are interested I will send you some further legitimate and authoritative information to your email address that will highlight some leads to a real investigative journalist story - Headline is "Why Does My Doctor Say That Diet Has Nothing To Do with AutoImmune Diseases?"

I have been self treating my incurable autoimmune disease for 30 years with a restrictive diet and exercise and supplements - and yes I really do have AS and mine is not a mild condition or in a placebo temporary remission. I am one of a growing army!

I read some of your stuff on the internet and you seem to research very well - personally I would appreciate some careful consideration of some of the evidence before deciding what to write regarding false hope.

Kind regards,

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Date: 23.02.2015
From: sleekfox

Subject: Re: False hope: journalist's query

There are two issues here for me. One is about people joining up to forums in order to market their 'remedies' (which happens regularly on here as it is not moderated very assiduously) and then there are people wanting to discuss alternative treatments. With the former it is generally very easy to see where they are coming from and what they are selling. With the latter, there may well be disagreements about treatments but it's not the same thing at all.

It would be easy to see from scrolling through posts on here when people have joined the forum in order to promote their product/book. I don't feel vulnerable to this type of marketing in spite of poor outcomes with traditional drugs. I am perfectly capable of ascertaining what might be snake oil or what might be useful to me, if not now, then later. The difference with alternative treatments, rather than products, is there is generally quite a lot of information online which may be useful in making a decision to follow a course of treatment or not to do so. As Sean says, these things are becoming more mainstream so there is more information available.

However, i can't speak for how other people feel about this issue. I don't know of anyone trying a product that has been marketed through forums.
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