PeanutAllergyUK

[allerG]

Greetings all, I'm new to the Forum but obv live in the world of allergy by Profession. Ive found some of the discussions held really interesting and consider most of the responses to be appropriately cautious when uncertainty rules i.e. moderators are on the ball.

I have a question which some may care to offer an opinion on. There are commercial ventures held under the Allergy Banner where any person may purchase a stand to market and sell their product. Many of the products are evidence-based and ethically marketed, but many are not. The latter products are usually benign but some may be harmful. For example, dodgy allergy tests may falsely diagnose the presence or absence of a significant allergy with safety and/or nutritional consequences.

Please would you answer the poll below (i hope correctly designed to offer you a 'yes' /'no' option).

[Admin: post edited to add poll at user's request]

The participation of Health Care Professionals and Allergy Charities at open Allergy Events serves to endorse and legitimise all exhibitors including those exhibitors/organisations promoting products/investigations that are not evidence-based and potentially even harmful.

Yes, I agree with the above statement.
No, I believe the participation of such persons/organisations should be encouraged as it is of benefit to the allergy community at large. [/quote]

[Storm]

Hi George,

Thank you for your feedback on the forum.

[allerG]

Sorry, could not get the poll function to work, feel free to simply post your opinion.

Thanks

[emmaj24]

Hello,
Always happy for doctors to take an interest in our problems so welcome and thank you

You asked:
There are commercial ventures held under the Allergy Banner where any person may purchase a stand to market and sell their product. Many of the products are evidence-based and ethically marketed, but many are not. The latter products are usually benign but some may be harmful. For example, dodgy allergy tests may falsely diagnose the presence or absence of a significant allergy with safety and/or nutritional consequences.

My response: I am absolutely against these things because so many people are conned by them and I find that appauling. Yes I admit there have been times in the past when in desperation or stupidity (or both!) I have believed in or convinced myself of these companies being honest/helpful and I would love it if they were stopped so that no more people are conned in this way, given false hope or end up parting with cash for things that are unhelpful or at worse downright dangerous.

I have posted many times on the forum about the importance of checking sources of information, online and in the 'real world'. The HPC is important and I believe that all medical professionals should be protected by systems like this and that people who call themselves things like nutritionist, which we know means absolutely sod all - anyone can call themselves it, should be banned because the general public don't always know that this is the case and as you say they may then take advice that leaves them with a totally unbalanced diet with major nutritional deficiencies not to mention paying out for tests which prove nothing - hair analysis I ask you! what wally thought that one up! or paying out for special diet foods when they aren't needed. Nutritional advice should be from proper Dieticians only. Just like at the hosptial you should see a doctor not a nurse pretending to be one. I believe that people undertake training for a reason and its hard to get into those professions for a reason and we should value that and everyone should understand that and get that level of treatment, they deserve it.

I am a big fan of Dr Ben Goldacre - everyone should read his book 'Bad Science' (or the website of the same name) he writes very well in explaining how all sorts of industries con us with pseudoscience, he's a real doctor too which is also good to know! NHS choices, bandolier and cochrane are good for info because they are evidence based. Sadly so many companies - take BANT or Patrick Holford as an example - claim their tests have 'scientific basis' and its just not true the studies are flawed, non-existent or just plain fallacy. It really winds me up to be honest. I wish there was a public campaign (Horizon/McIntyre investigates style) to show people what these charletons are really like and explain what's true, what's not and how to tell the difference. As I say NHS choices part where they review news items and then explain the science behind it is a good step in the right direction.

Testing is a mine field that I believe gains ground because people are frustrated at not being able to get tested or having to wait ages for tests on the nhs. Then these idiots use the person's vulnerability and desperation for an answer to make you believe their test is true/accurate/useful and you want to believe them because you want an answer. At the minute there are avenues you can go down if you get no luck with the nhs - bupa or bmi for example who offer real medical tests but even with bmi they need a doc's referral so if the person has no support from their gp they are still unable to access the service. Anyone can access the bupa one but it is expensive. That in my opinion gives rise to people paying for a mail order test or going to a health food shop and believing a muscle strength test is real. Obviously that's not the case but if you're new and anxious you might just believe them, especially if they have a snazzy 'consulting room' and brochures and websites! AARRRGGGHHH!

Sorry for the rant, this is something I am really passionate about. Hope its of some help to you.

Best Wishes,

[Storm]

I am completely against these types of products and services. I also think that the organisers of allergy expos or fairs should vet the participants and not allow them to have stand. It shouldn't just be about the bottom line... £££.
_________________
12-year-old son: allergic to peanuts, nuts and raw egg whites

[alexism]

Hi AllerG - welcome to the forum and thanks for your comments. I am a junior doctor but do not work in allergy so do try to keep things appropriately cautious!

If you post what options you want in the poll, I'll put my admin hat on and edit your post to include them.

I agree that there are lots of unproven allergy testing techniques out there. Rubbish like NAET particularly gets my blood boiling, most of the rest I suspect fall into the 'well-intentioned but no evidence for benefit' category. Enough vague symptoms get thrown under the allergy category as it is without misdiagnosis from such 'testing'

Alexis
_________________
Nothing in this post should be construed as medical advice.

[Angie@itsnutfree.com]

Hi George

Nice to see you here!

We don't exhibit at these shows anymore.

PM or email me if you would like further information as I don't think it would be prudent for me to voice my opinions here!
_________________
Angela Russell
Founder
It's Nut Free
Northallerton
DL6 2NG
Tel: +44 (0) 1609 775660

[williamsmummy]

electronic testing, oh, get that banned............

the health food shops really promote them, they are the first port of call for many people with food intolerances, and many of them take their kids.

a lot of people over the years have suggested i take my allergic child there.... i have to refrain from sarcastic comments.

have seen at the early allergy shows food testing , just for ezcema, and watched parents with itchy children debate if they can afford it, and spend money on it.

at the first allergy show, there was a stall with a sign claiming to cure anaphylaxis, glad that doesnt happen now. but still, vast majority have no idea about ige allergies, and those that do, seem happy to experiment on anyone that can pay.

if there was a march to downing street to ban allergy testing, i would come, i would even collect signitures..........

am sure everyone here would sign !

[admin]

Poll added to the first post at allerG's request.

[AlexG]

I don't think the participation or attendance of health charities serves to endorse and legitimise - but I do think that official 'support' / sponsorship does.

The Allergy Show is under new ownership this year, so it will be interesting to see who exhibits (and indeed whether there are other changes...), but I note from the website that it is being supported by Migraine Action, AAA, Allergy UK and Coeliac UK. I sincerely hope the exhibitors are sensible. We'll find out soon enough. I should be on the press mailing list and will keep the forum posted.

Last year the scientologists were there, if i recall rightly promoting dianetics. I stayed away from their stall, so I don't know whether they were promoting it in relation to allergy, but I've seen other non-allergy related exhibitors - eg herbal tea companies - present at such shows, so it's possible they weren't making any claims. I agree the Vega, NAET and rest of their absurd ilk should be banned.
_________________
Alex Gazzola

www.twitter.com/HealthJourno
http://foodallergyandintolerance.blogspot.com
www.alexgazzola.co.uk

[Angie@itsnutfree.com]

Do people with nut allergies go to these shows?
_________________
Angela Russell
Founder
It's Nut Free
Northallerton
DL6 2NG
Tel: +44 (0) 1609 775660

[AlexG]

I worked on the Foods Matter stand last year talking to visitors for three days and perhaps spoke to five or six people with nut allergies - or parents of those with nut allergies. The vast majority of those attending seemed to be coeliacs / gluten intolerants. A few dairy intolerants. A few with eczema / asthma.

Tickets seem to be free this year. There's a link which I posted on my Twitter feed earlier today if anyone's interested in registering.
_________________
Alex Gazzola

www.twitter.com/HealthJourno
http://foodallergyandintolerance.blogspot.com
www.alexgazzola.co.uk

[Angie@itsnutfree.com]

Thanks, Alex

I think the man said there were 1,000 free tickets altogether but I may have misunderstood...
_________________
Angela Russell
Founder
It's Nut Free
Northallerton
DL6 2NG
Tel: +44 (0) 1609 775660