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Crohn’s disease – Part 1

3 Nov

Hello everyone,
Today I am gonna be writing the first in a series about something a little more personal than normal – my Crohn’s disease. Maybe the best place to start would be how I was diagnosed.
Around last December, I started suffering from fatigue. It progressed until I was coming in from school, crashing on the sofa and sleeping. This fatigue had a rather profound effect on my schoolwork. Report grades started slipping etc. At first, everyone thought I was just being lazy. I didn’t know what was happening, so I decided I was going to get to the root of the problem.
I booked an appointment with our local GP for around February. I told her all about the fatigue. She send me for some blood tests. I came back as anaemic. At first, because it was the most likely cause, I was prescribed an iron supplement (ferrous fumarate, for those of you interested). More blood tests to check if it was iron deficiency. Next day, I could start taking them. I actually started to feel a little bit better (placebo effect!) but then received the results. It wasn’t iron deficiency. So, I stopped taking the iron. (It had horrible side effects!) More blood tests to see if I had a thalassemia trait (unlikely, I don’t have anyone Mediterranean in my family). They came back as negative. Still no explanation for the symptoms.
Half term came along and I actually started to feel better. I thought everything was over. School started again and it was apparent that it wasn’t. The symptoms came back with a vengeance. I also started noticing joint pains. This made my dad consider the possibility of IBD, especially given my bowels as a baby and more recently. I booked another appointment with the GP. She said that IBD was fairly rare and we should test for that later. I still didn’t know what was going on. I booked another appointment for a couple of weeks later to ask for a referral to a gastroenterologist. She said she’d discuss it with her colleagues.*
About a week later, at around 10:30pm, I started suffering from excruciating abdominal pain. We waited to see if it would subside, but at about 12am we decided I should go to hospital. Then our electricity failed. An hour later, I was finally taken.
First off, I saw the out-of-hours GP. She was convinced it was nothing and wanted to rule out appendicitis. However, she decided to send me home. I told her how I’d been visiting my GP for months to no avail. She tried to get hold of the Paeds surgical SHO. No answer. She left a message. Back to Paeds A&E with the assessment in hand. We took it to the nurse about 10 mins later when nothing had happened and I noticed a sign saying “Take all forms to the nurse” or something along those lines. I was taken to a cubicle.
The Paeds SHO arrived and Dad voiced his concerns that it might be IBD. I said how I’d been going to the GP for a while to no avail. After explaining the symptoms, she agreed that it was quite probably some form of IBD. I had some blood tests done at about 4am, after a sleep. I was then taken to Paeds South, the surgical ward (in case it was something surgical like appendicitis), where I waited. I was seen by a number of other doctors and sent for an ultrasound of my bowel. After this showed thickening of the terminal ileum it was decided that I should be moved to the non surgical ward in the children’s hospital. I waited some more and Mum came in to visit.
After waiting some more, I finally got seen by one of the paediatric gastroenterologists. He explained that they thought I might have Crohn’s disease. It was more than a little hard to take in at the time. Being diagnosed with a lifelong illness like Crohn’s is something I wouldn’t wish on my worst enemy. Anyway, I was given a can of Modulen IBD (disgusting stuff unflavoured) and was on my way.
I had some more tests such as a white cell scan, barium meal and follow through (odd after effects…) and finally a colonoscopy. The prep for a colonoscopy is hell. I also took the option of having it under general anaesthetic (my second time with propofol!) which my other gastroenterologist said was the best option afterwards. What was meant to take something like half an hour took closer to 2 hours. I have very oddly shaped intestines!
In the next installment of ‘Crohn’s disease’ I shall talk about what happened after I was diagnosed.
Goodbye for now.

*a week or so after my diagnosis, we got a referral letter in the post.

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Bleachgate: The Response

14 Aug

Wow. What just happened? I think Bleachgate went viral.
So far, I have received loads of messages of support from folks including Ben Goldacre (@BenGoldacre), Simon Singh (@SLSingh), Tom Chivers (@TomChivers) and John Dixon (@JohnLDixon). I’ve done
interviews for The Pod Delusion and Skeptics Guide to the Universe,
and a video production company in Yorkshire want to do a documentary
about me and my skeptical outlook.
So, what have I been up to since the video/blogpost? Well, I’ve not exactly been sitting around doing nothing!
Firstly, I have reported a couple of websites selling Miracle Mineral Solution to Consumers Direct who sent them on to Trading Standards. Trading
Standards have forwarded the complaints to the MHRA, who will get back to them with info on whether A) MMS is safe and B) the claims of efficacy are true. Given that we already know what the results should say, Trading Standards should be able to nail these websites. (Links now included here and  here; thanks for the NoFollow info!) I’ve also, as previously mentioned, done interviews for The Pod Delusion and Skeptics Guide to the Universe.
Since the video became popular, I was permanently banned from Crohn’s
Forum. A representative has also posted various comments on the video
claiming that I lied and that I am misleading everyone, that I was
illegally on the forum and that I was rude, aggressive and insulting.
I’d like to address these claims.
1. The claim that I lied in the video.
I did not once lie in the video. You can verify this yourself by
looking at the FreezePages of the threads herehere.
2. That I was illegally on the forum. This claim was made based upon
the fact that to register on the forum, you have to agree agree that
you are over 18 – unless you e-mail the admin asking for permission
beforehand, which I did.
(I will gladly forward these e-mails to anyone who asks for this proof.)
3. The final claim that I was rude, aggressive and insulting; I disagree
with. @medtek, @IrregularShed, @DanMcskelly, @frozenwarning, @KimMKendall, @AriesFyre, @FerFrias and @DT_1975 all followed my posts as Bleachgate unfolded and are willing to put their name to it that I wasn’t rude, aggressive or insulting (although @DanMcskelly says I came across as a bit snooty. Sorry if I did. That was never my intent.) But don’t just take their word for it. Read the FreezePages and decide for yourself.
Now, what’s next?
Well, Councillor John Dixon has asked me if I want to raise a public question in a Cardiff Council meeting and had offered to help me prepare. I have taken him up on this offer and will, this week, be in contact with him about this.
So, once again, thank you all for getting the story out there.
Special thanks to @kashfarooq for sending me @crohnsibd’s comments by email! Also special thanks to everyone who wrote their own blogposts about Bleachgate.
I will, of course, keep you informed of any and all news regarding Bleachgate!
Thanks for reading.
– Rhys

EDIT: I’ve now included those links. Thanks to everyone for the advice regarding NoFollow!

Bleachgate

10 Aug

Hello everyone. This is a text adaptation of my video which you can find here: http://twitvid.com/Z7TOH

Today, I am going to write about Crohn’s Forum.com and what went down on Monday and Tuesday of this week.

I’ll start by giving a brief background to Crohn’s Forum. It’s a support forum for those who suffer from Crohn’s disease. It’s a very active forum with lots of members.

I signed up a few months ago, just after I was diagnosed with Crohn’s. I was looking for a support forum, a community of people with same illness as me and some, on the same meds as me.

I was warmly welcomed by the people on the forum. People sent their apologies and condolences for my diagnosis. etc.

I was never an overtly active member. I popped back every now and then to see what was going on, or if I had a problem/question, I’d post it. e.g. insomnia, dealing with other prednisolone side effects/other Crohn’s symptoms. Another thing I’d do is read someone’s stem cell treatment blog, which I found very interesting.

All the while, I noticed there was a lot of alternative medicine pushers/believers on the forum. One thing I noticed was Miracle Mineral Solution. I joined this forum before I became active skeptic. I was skeptical of this product, but at the time didn’t do anything about it.

Yesterday, however, I started thinking about Crohn’s Forum and the alternative nonsense going on. I remembered this Miracle Mineral Solution and so decided to Google it. What I found was shocking to me.

First off, I found an FDA safety bulletin posted on 30th July 2010. From the FDA page which can be found here, I learned that MMS was an industrial bleach, when made up as according to the instructions. It produces chlorine dioxide, which is used for stripping textiles and industrial water treatment. I’ll come back to the FDA warning in a minute. After learning what it actually is, I went to the official MMS website. It is utterly disgusting. It claims that MMS is a cure for AIDS, cancers, hepatitis A, B and C, malaria, herpes and tuberculosis. This started my alarm bells ringing. The website screams DANGEROUS WOO to me.

So, the website also tells people how to take it. Basically, after making it up, you take a few drops of it. You judge if you’re getting better by how nauseous you feel after taking it. Seriously.

I’m not going to go into the pseudoscientific nonsense behind it, because frankly, it’s a waste of time. I will however summarize it. The website claims MMS helps the body to identify toxins and that it helps remove said toxins. Removal of these toxins causes nausea. So, how might one explain that it also causes nausea in well people? Of course, it’s cleaning up past infections or other illnesses being “mopped up”. Yeah… Right…

So, back to the FDA warning. It’s fairly straightforward. It states the problem with MMS, that it’s an industrial bleach. Drinking bleach is very obviously dangerous and has effects such as nausea, vomiting, diarrhoea and symptoms of severe dehydration. It then goes on to mention how MMS makes unfounded claims of efficacy with regard to its long list of alleged cures. The FDA also notes how people might self treat and refuse conventional medicine and how this is dangerous. Finally, it recommends people stop using it and throw it out.

Seeing this, knowing that people on Crohn’s Forum use it, I thought “Damn, this is bad. I should warn them”. After checking to see if anyone had mentioned it before, I started a thread on Crohn’s Forum saying very simply, “Warning: Miracle Mineral Solution is dangerous.” I Implored people using it to stop and posted link to FDA warning. The first reply? “Wowza”. I thought, “Phew, thank goodness. If anything, that’s one person informed.” However, the thread quickly took a very different route. The second reply? “Oh but you neglect to warn about Remicade’s side effects!” They then gave a long list of Remicade’s side effects, both common and rare, which, yes, include reactivation of TB and various lymphomas (rare side effects, for anyone interested) However, in my initial post, I made no mention of conventional medicine. Their posting was completely irrelevant to the topic at hand. An ad hominem attack on conventional medicine, if I ever saw one.

Next up, a user named D Bergy, starts ranting about how chlorine is used in various pharmaceuticals and industrial water treatment. Again, completely irrelevant to the fact that drinking pure industrial bleach is dangerous. He then goes on to say about how big pharma won’t sponsor studies into things like chlorine dioxide and Low Dose Naltrexone (another forte of D Bergy) because the cost of a medical trial would offset any profit from a generic drug, because it can’t be patented. OK, fair point. Still, it doesn’t mean they should be blindly accepted and used without assessing safety. He also starts trying to counter a point I made in an earlier post that anecdotes aren’t evidence when it comes to medicine. He used a metaphor, saying “I wouldn’t look for double blinded trials when looking for a car, I’d ask my friends for advice.” I rubbished this, saying it’s hardly the same as a using a medical treatment which could easily kill or damage you.

I then called him out on a post where I’d seen him giving out dangerous, unqualified medical advice to someone wanting to start to take Miracle Mineral Solution. This person, before starting taking MMS, had a bad throat. It was about to get much, much worse.

D Bergy posted in the person’s thread, and I’m paraphrasing here, “Oh, don’t worry, that’s fine. You can still take MMS” Hmm… Doesn’t sound like a good idea to me. So, the person starts taking MMS and unsurprisingly, their throat gets worse. They post, getting concerned. D Bergy tells them it’s all normal and to keep taking the MMS. This person, stupidly, carries on. The next post I see from them says “I can hardly swallow my own spit”. D Bergy, yet again, tells them it’s normal and to carry on. This kind of unqualified medical advice is clearly dangerous. The person was probably suffering oesophageal burning due to drinking and gargling bleach, and was at risk of oesophageal collapse.

Back in my warning thread, D Bergy told me that I had falsified this claim, that he was handing out dangerous, unqualified medical advice. In response, I posted a number of quotes from the thread backing up my claim. He replies saying “You’ve taken that out of context!” I tell him I haven’t and he shuffles off. How I could’ve taken the quotes out of context is beyond me. I, correctly, claimed he was giving out dangerous, unqualified medical advice. I posted quotes with him giving out dangerous, unqualified medical advice. Nothing taken out of context. This calling out of a prominent member got a number of people angry and riled. I was also told by various users “Oh, well people have differing opinions on things. Judging peoples’ choice of treatment is wrong. No one in the thread was wrong. This is a support forum.” I was also told to stop slandering people. Something I had not once done in the thread. Another user then posted in the thread saying “I don’t mind this thread, so long as it’s respectful discussion going on.” I thought this might be a turning point in the thread, and we might actually get down to discussing Miracle Mineral Solution. Oh, how wrong I was. Instead, when I said I agreed with the respectful discussion, I was told it was told to “drop it” as it was neither the time nor the place to be discussing a) Whether D Bergy was a danger and b) Whether MMS was a danger. I made a posting saying I disagreed. It’s a treatment forum, therefore it’s the perfect place to discuss what some think is a treatment, and it’s 10 days after the FDA announcement, therefore it’s also the perfect time to discuss it, especially considering not everyone had heard the news before.

It was at this point that I started receiving abusive personal messages. A user known as Cackman888 sent me lots of PM’s calling me all sorts of nasty names. He also posted some of them in the thread. Back in the thread, I called for the name calling to stop and to start some rational discussion. These calls were both ignored. Instead, the name calling continued both in PM’s and the thread, with Cackman888 calling for me to be banned. He claimed I made out I knew everything about Crohn’s, something I never have and never would do. I do not and will not ever know everything about Crohn’s. Other people then started posting their negative conventional medicine anecdotes in the thread. It was quickly collapsing around me. I was also told that D Bergy had given great advice in the past and he’d been a member for years, and as such, it was wrong of me to criticise him. I was criticised for taking the scientific viewpoint. I decided “Right, that’s it. time to abandon ship.”

I started another thread entitled Anti-Skepticism. I’ve lost the exact wording of it, since the thread was deleted, so I’ll rely on memory. Basically, I started off saying how disgusted I was at the response to the warning thread. I told them that if anything, they should be more skeptical of potential treatments, given that they’re at a higher risk for snake oil peddlers to peddle them something. I once again questioned that it was not the time nor place to discuss MMS. I then called for negative alternative medicine anecdotes, something you never hear unless asked for. Sadly, this thread didn’t turn out the way I intended. Instead of actually sparking discussion, I was told that I’d interpreted the “neither the time nor place” thing wrong. Someone also posted telling me they trusted people on forums more than scientific evidence as “science has been proven wrong before”. The only logical post in the thread was from intermanaut summarising why people turn to alternative medicine. After all that, some more posts had been made in Miracle Mineral Solution thread. The discussion had sadly; well sort of sadly, turned to homeopathy. I flexed my knuckles and got down to answering the post. They told me they’d used homeopathy on their horse and that horses couldn’t possible have the placebo effect. I sent them a link to Science Based Medicine.org’s take on the matter and pointed out that animals can exhibit the placebo. They also said about how they hoped they could use alternative medicine to treat their son’s Crohn’s forever and that I’d be open minded to try it. I replied “Thanks, but no thanks. I rely on science based medicine”

Finally though, a senior member took notice of this thread and, to summarize, he told people to calm down. He said to them not to take the thread as a personal attack and that my opinions also shouldn’t be mocked – a very good point. Here, he was pointing out the irony of the alties criticising my opinion of alternative medicine and then saying “Don’t criticise our opinions”. He summed up my post excellently and then said “He was offering this alternative viewpoint on your alternative viewpoint.” He also said how he was appalled that there were calls to ban me, simply because I was looking out for people’s wellfare by posting this news about MMS. Huzzah! Someone with a bit of sense. This didn’t, however, stop the mods deleting both my threads.

I received a stern telling off by PM from a mod, saying I’d have a two week ban if I posted any more posts which upset people. I replied to this PM saying “If people get upset hearing that their favourite quackery has been banned by the FDA for being a danger, you should be contacting them telling them to grow up.” A number of different members started going round my previous posts where I’d criticised alternative medicine. Again, the replies were all “This is a support forum. How dare you ask for scientific proof to back up peoples claims! That’s antagonistic behaviour! Don’t criticise or question people’s choice of medication. How would you like it if people criticised your choice?” to which I responded “I wouldn’t care. I’m not married to azathioprine or prednisolone AND I have scientific proof backing up my choice. What do these people have? Nothing. And yet they get upset when I repost anything critical of their choice, even if it wasn’t me who posted it originally!”

At this point, I left it, as I was sick of arguing with people who clearly were not listening to anything I had to say, and were going through previous posts of mine looking to antagonise me.

So, this morning, I receive a PM quoting where I’d said “I upset people by pointing out they’re using fraudulent, even dangerous so called medicine? It’s them you should be writing to not me.” and a response to this quote, telling me it was my attitude which is upsetting and would not be tolerated. I was, at this point, banned for 10 days.

Make of it what you will. To me, it suggests that they want to silence debate. It appears a great number of the people who make up Crohn’s forum are in love with so called alternative medicines. What I don’t get, is how Cackman888 wasn’t banned. I was not being inflammatory at all with any of my posts, even when calling out D Bergy. He simply screamed at me to get off the forum and called me a number of derogatory words. I thought the people posting in the threads asked for respectful discussion. Why were they not telling Cackman888 to calm down and stop being offensive? Also, where is the ban, or at least warning, for D Bergy? He was clearly giving out dangerous, unqualified medical advice that someone was taking as if he was a medical professional. Clearly, it’s one rule for them and one rule for everyone else.

I was ostracised from the community, merely for asking for proof of a potential treatment and posting the dangers of another. It’s ridiculous. They’re willingly keeping themselves and, more dangerously, others ignorant, by deleting posts like mine.

So, what can we do to tackle the kind of problems demonstrated on Crohn’s forum?

Well, I don’t know. Some people have suggested that you sign up and start a guerrilla campaign from the inside. I can’t personally help with this at the moment, as I was not just userbanned, but IP banned from the forum. I’m sure that by building the number of skeptics active on Crohn’s forum will help in future discussions, however. The snake oil users already have numbers, which is why they can so quickly take over and take down any threads which go against their illogical, antiscientific beliefs. I think that one major problem is that a number of the mods of Crohn’s forum are also of the delusion that debate about these products is bad.

However, even though it appears all bad, at least the people who read the thread are now more informed. At least those who took the time to make note of the thread can make a more informed decision about their health and use of products. If they choose to ignore this advice, on their own head be it.

I suppose one more good thing that can come of all this, however, is knowing that the FDA are going to start prosecuting those who sell or advertise Miracle Mineral Solution. In the statement made to the press on their website they say “The FDA continues to investigate and may pursue civil or criminal enforcement actions as appropriate to protect the public from this potentially dangerous product.”

What would also be good, in my eyes at least, is if it were possible to prosecute those selling and advertising MMS under UK law, as the Cancer Act of 1939 states that no-one may claim to have cured cancer, which websites relating to Miracle Mineral Solution have done so.

So, that just about wraps up my first real blog post.

Any response to it, whether it be on twitter (@rhysmorgan) or in the comments, would be much appreciated. If you want to email me, don’t hesitate to ask me for my email address too!

Also, noticed any mistakes? Please let me know! Thanks.

– Rhys