While walking to the village centre today with my next-door but one neighbour, we were discussing our care. We both see Dr. Strangelove, though she does not have CLL.
Guess what. Her husband does. Diagnosed a month ago.
I feel quite dismayed and depressed, just two days before Christmas.
The controversy I noted in my last post has moved on a (small) step, and perhaps some of the experts in the field may now be starting to follow the example set by Teh Prof.
Professor John C. Byrd, (M.D. D. Warren Brown Professor of Leukaemia Research Professor of Medicine and Medicinal Chemistry Interim Co-Director, Division of Haematology-Oncology, Department of Internal Medicine Associate Director for Translational Research, The Comprehensive Cancer Center The Ohio State University Columbus, Ohio, 4321,)has released the following statement for dissemination –
” I have seen a lot of questions about vaccines that have live vaccine components. In particular, the varicella zoster virus vaccine which should not be given to CLL patients due to their immunocompromised state. Some practitioners are mistakenly giving this and it places CLL patients at risk. CLL patients can be administered vaccines that are not live (such as the pneumovax). Please feel free to disseminate this. ”
This subject was originally raised by Dr. Brian Koffman, a CLL patient, on his blog, and has also been noted on the JREF forum, with an as yet undecided view. CLL Canada is also reporting this statement.
I hope to report further developments soon.
Is your immune system buggered? Mine is, in theory. After chemo treatment, we normally have a long course of prophylactic antibiotics, and spend a lot of time worrying about hygiene and herd immunity etc. etc. CLL is an immune system illness, so I’m naturally concerned.
I had a flu shot a couple of weeks ago, and a pneumonia shot last year. (the pneumonia shot is supposed to last for five years or so, so I don’t need anotherr one at the moment.) Immunisation is fine and dandy, though its effectiveness in CLL victims is unclear. What is very clear however is that live vaccines are advised against by the worlds experts in CLL. I’m not a medic, but I believe that this has something to do with live vaccines adding to the workload of our already compromised immune systems, which may not be able to cope.
I was very surprised to read this blog post from Dr. Brian Koffman, a family doctor in the USA, and a CLL victim – post stem cell transplant. Then I read a follow up post. Both posts detail his correspondance with the C.D.C., (The Centre for Desease Control in the USA) and their flat out refusal to change their advice regarding Herpes-Zoster vaccine, an attenuated live vaccine. All CLL victims should know that they should never have live vaccines. The CDC says that it is safe three months after treatment for leukaemia victims, and the facts are quite the opposite. This is just wrong for CLL victims.
Teh Prof states on his blog –
“It would be perverse to allow vaccination with live vaccines at three months into a remission.”
The post is a detailed analysis of the reasons for not advising CLL patients to have live vaccines of any kind, ever.
If you have a blog, writing about this subject and linking to the posts from Brian and teh Prof that I have linked above would add a little pressure to the CDC to change their guidance on this matter. A link here would also help. If you do write about this subject, let me know so that I can include your post here too. We need Google juice on this.
Ofquack, the Complementary and Natural Healthcare Council (CNHC), launched its website today. This organisation is supposed to regulate all the practitioners of woo who have their own governing bodies, here in the UK.
Because I’m interested in these things, I took a look at the site, and there are a couple of things to note. On the welcome page is the grand introductory paragraph telling us the function of Ofquack –
“The CNHC was established in April 2008. It heralds a completely new approach to the regulation of complementary therapies in the UK. It builds on the excellent work already undertaken by many of the professional bodies within complementary and natural heath care. Upholding the highest professional standards, the creation of the CNHC will provide a boost to consumer confidence and public trust which will in turn benefit all practitioners. Significantly, the roles of the professional associations and the regulatory body are now separated in order to give increased clarity of function.”
Thats all very well and good, but unfortunatly, up until now, Ofquack have carefully avoided any discussion or comment on whether these woo therapies actually do any good. Now they have published a mission statement, I am looking forward to future developments.
CNHC’s mission is to support the use of complementary and natural therapies as a uniquely positive, safe and effective experience.
On the “Contact Us” page of the site is an email address, so I have sent them the following message –
Subject : Congratulations on the Launch of CNHC
Congratulations on the launch of your website which I have read with great interest.
I particularly like the Mission Statement, where it states that the CNHC will be supporting the effectiveness of CAM and ALT-Med practitioners.
I wondered if you could tell me how CNHC will know if one of the regulated therapies has any effectiveness at all?
I look forward to your response.
Best Wishes for the future
I wonder if he will respond?
On the Badscience Blog, Ben Goldacre may well have started a trend this week, and it has since been copied on a couple of other blogs, giving a rather neat and pleasing balance to some idiocy. Ben posted a video of a homeopath, explaining how homeopathy works. Featuring a woman I have called Dr. Dippy. She mangles all of science in an astonishingly deceitful manner as far as I can see. Perhaps she just had no idea what she was talking about. Dr. Dippy may have caught on that Ben has been having some fun at her expense, because the video is no longer available, but careful searching has provided an alternative, which you can see on youtube. It isn’t about homeopathy, but it is Dr. Dippy.
My video clip is from a homeopath in Leeds, explaining how a doctor just removes a bulb in the dashboard, and a homeopath actually cures. Still doesn’t really say how though.
A bit silly I think, so in the spirit of the game, here is my Feynman Chaser.
I do like Feynman. There is plenty of other stuff to mix a different chaser with. Perhaps we’ll see a few more popping up around teh interwebs.
P.Z. Myers is a biologist and associate professor at the University of Minnesota, Morris. He went to the movies the other day with his family and a friend, to an advance screening of the creationist propaganda movie, “Expelled.”
The film has a claim to fame in that it is narrated by Ben Stein, who you may know as the shrink in the film The Mask, and the makers did many of its interviews for the film under false pretences.
P.Z. must have been on a blacklist of people not allowed to see the film, as he was asked to leave the theatre and its premises by a policeman. So he did, and blogged about it straight away, from the mall where the theatre was.
His family and guest got in of course, and his guest was none other than –
There are currently over 750 comments on the blog post. Wonderful.
A couple of weeks ago I wrote about a charlatan ex doctor who had been struck off by the GMC, threatening to claim millions of pounds in damages from Netcetera, for hosting The Quackometer. The Quackometer had written some truths about Dr Joseph Chikelue Obi and he made some groundless threats, and you can read all about it in my earlier post, Quackometer Under Fire.
On Monday, the writer of the Quackometer, known as Le Canard Noir (LCN), was given about twenty minutes notice by the Spineless Tosspots called Netcetera that they would be pulling the plug on the Quackometer, and other pages by the writer. All because a real life genuine quack and charlatan threatened to sue the spineless tosspots.
LCN received the following email from David Boswell, of Netcetera –
Thanks for your comments. We do not wish to be in a position where we could be taken to court, and incur the loss of time and expense that would involve. Consequently Netcetera have decided to suspend the Quackometer website, with reference to our Acceptable Usage Policy, the first part of which is quoted below. The full policy can be found on our website www.netcetera.im/SiteInfo/AUP/
“Acceptable Usage Policy
This policy is subject to change, without alternate notice, so please check regularly for updates. This policy is in addition, and considered part of Netcetera’s Terms and Conditions.
Netcetera will be the sole arbiter as to what constitutes a violation of this provision.
1) Web Hosting
1.1) Netcetera reserves the right to suspend or cancel a customer’s access to any or all services provided by Netcetera, where Netcetera decides that the account has been inappropriately used. Netcetera reserves the right to refuse service and /or access to its servers to anyone.”
We will prevent public access to the site as of noon today 18th February 2008. You will be able to access the content to be able to transfer it to another host if you so wish.
We will hold the content available to you for 30 days, and then we will remove it from our servers.
Lessons to be learned from this?
Don’t use Netcetera as your host if you can avoid it. Some companies enforce their “we’ll take your site off the internet if a total schmuck frightens us” policy.
Other people commenting about this include Rupert Goodwins at ZDnet , Gimpy , jdc , coracle , shpalman , Holford Watch , Apathy Sketchpad , Letting Off Steam , The James Randi Educational Foundation Forum (long one that), BPSDB.org , Dr. Aust and finally (at the moment) Dr.T .
You already know not to trust Dr. Obi, right?