Subject: Re: False hope: journalist's query
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 Patient.co.uk 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.