I didn’t know him personally. We’ve never met, or spoken. We’ve had email conversations, and I have been an avid follower of his blog, and his contributions to teh ACOR CLL List, since my diagnosis. As a leader in teh field of research into and treatment of CLL, his contribution was huge. His dedication to helping CLL victims understand their illness was equally huge, as can be seen from the contribution he made to teh ACOR list, and his writing on his blog.
A number of qualities stand as examples to us all. He was passionate about many things, and was able to give vent to those passions on his blog. In other contact with his internet friends and admirers, patients and carers of CLL victims, he was dedicated to giving us teh best advice. He never stooped to criticism of the sometimes misguided or often stupid advice given by others on teh ACOR CLL list, but maintained an impartial outlook, guided by the best research, science and latest information. Cynicism rarely surfaced, but he could be sharp regarding poor research, or shoddy conclusions. He understood very well the difference between anecdote and evidence. Others could do well to follow his example.
One incident endeared him to me in particular. I had been ranting as usual about the rather unpleasant and certainly unproven nature of Gerson treatment for cancer generally, and at a Gersonite on the ACOR list who yet again was telling us how wonderful those castor oil poultices were at reducing swelling in, well, swollen lymph nodes. My own parody poultice involved using garlic, green tea and mustard with the castor oil, its efficacy being due to the foul smell.
His response amazed me, as normally he would not stoop to reply to such a rant —
“I’ve heard about that method, Andy. I believe it works better if you smear the skin over the lymph nodes with Sunlight soap and lie with the axis of the body in line with the magnetic pole. Some authorities insist that Starbucks enemas are an essential part of the treatment, but others insist that Nescafe is just as good.
That was the closest I have ever come to spraying coffee all over the computer screen.
Teh Prof will be sorely missed. Our thoughts and condolences go to his family.
Spending five minutes of spare time on the Dr Myhill website the other day, (I’d recommend it for shiggles at some of the stupid, if it wasn’t so serious,) when the huge section about Mitochondrial Function caught my eye.
Her ideas are based on a paper she co wrote, and she appears convinced that she has got to the central core of ME/CFS, from the rather powerful message her website conveys. (Note the terribly low impact Journal this paper is published in, ranked about 650th in its sector. That means that somebody doing research in the field, this journal would be the 650th one they would turn to for the most reliable and up to date information. Gosh) This seems to be one of the central ideas behind Myhills treatment of ME/CFS, and she advises patients on her website how to get the tests ordered, for £225.00, and how much she charges for a letter to the patients GP interpreting the test results, £80.00. You might think that a discovery like this would be one of the main subjects for discussion among ME/CFS activists around the web, but frankly, it isn’t.
On the Myhill echochamber facebook page just this week, Sally Phillippe was bemoaning the fact that mainstream medicine is so unfair to her heroine, and used something copied from the ME Association Facebook page as evidence. I didn’t really pay attention at first, but it niggled away at me until my hindbrain started sending messages to my conciousness. Mitochondria may have been involved in this process, I’m not sure. A low energy bulb struggled into life in my head and I went back, and commented on Sallys original question. That meant mischief was afoot, and it was. In typical echochamber fashion, a couple of hours later, the whole thing had been expunged from history in order to save their heroines dignity.
Why all the fuss, and what was deleted? It seems that Sally thinks it is disgusting that mainstream medicine doesn’t take Myhill Mitochondrial function tests, or her £80.00 letter very seriously. A number of patients had asked the Chief Medical Advisor and Trustee of the ME Association, Dr. Charles Shepherd, about the validity of the Myhill Mitochondrial Function tests, because their own GPs had dismissed the tests and Myhills £80.00 letter.
Shepherds reply was as good a put down as I have seen recently, bar one, as follows –
“This expensive private test has not been validated and I am not aware of any clinician who works with muscle diseases, especially mitochondrial disease, that uses this test. Hence it is not used in the NHS. I have been involved with various aspects of mitochondrial muscle research in relation to ME/CFS over the past thirty years, including the use of my own muscle, and I am equally sceptical about its validity. I do not therefore make use of it on a personal basis or with my ME/CFS patients.”
“Hopefully, the new mitochondrial research (Prof Anne McCardle et al) that we are co-funding with the MRC will lead to the development of a test for mitochondrial function that will be of value in both the diagnosis and management of ME/CFS.”
“This test has not been validated or replicated. The test is not used by clinicians and researchers who spend their time dealing with people who have mitochondrial muscle disease.”
I can see Dr. Shepherd penning the phrase “pill peddling uberquack” before constraints of politeness between Doctors led him to respond as above.
And now you know who I think penned the best put down in recent history.
(The original exchange that prompted
Sally’s question on the echochamber
facebook page, can be seen here.)
The long awaited GMC inquiry into Dr Andrew Wakefield reported last Thursday, and the results are a huge condemnation of his behaviour. If the GMC runs to form, he will ultimately be struck off the medical register, and no longer be able to practise at all, or call himself Dr.
There is reams and reams of stuff on the internet about the verdict, a lot of it much more forthright than this BBC news report, and I would happily provide more links if there is an interest.
The reason I post it here is that I am aware that some of my readers live in a country called America, which has a State called Texas, within which is a city called Austin. Some actually live in Austin.
In Austin is a company called “Thoughtful House” set up by Wakefield in order to continue to do the very things he has been condemned for by the GMC. Oh yes. A dishonest and irresponsible doctor who acted unethically in the UK has started a company doing those very same dishonest, irresponsible and unethical things in America. (Some years ago actually. How can somebody like that get away with it?)
Wakefield’s dishonest, irresponsible and unethical work sparked off the MMR non-controversy in the UK, caused by him and reprehensible media reporting of his research, and his un-evidenced comments.
Nowadays, websites like mercola, natural news and many many more (Huffington post, Oprah for goodness sake) are on an anti-vax campaign fronted by ignorami like Jenny McCarthy and her idiot boyfriend.
All of this has sparked off what is, to CLL victims like us, a serious increase in communicable illness like measles, because people have believed the non scare concerns about vaccinations, and the consequent reduction in herd immunity.
Two things then.
1. If you live in a place called “America,” do not deal with a company called “Thoughtful House” who are run by a dishonest and irresponsible doctor who acted unethically.
2. Condemn Anti-vaxxers at every opportunity.
Normally the nutcase sites of the internet can be ignored, laughed at, pointed at and the wonderful ignorance on display can be dismissed as relatively harmless. I am referring to the well known ones of course, like Whale.to, Mercola, Natural News, Jabs, Hpathy and David Icke. When these sites are referred to in discussion, it can easily be pointed out how silly they are. It would be nice if this kind of stupidity didn’t exist, but as it stands, it is impersonal, and is quite obviously the output of challenged minds.
Recently, an astonishing website has come to my attention, via the CLL Forum. Written by an Australian / Dutch with CLL, it is chock full of woo. If the stupid really burns then you would need full racing Nomex in order read it all. The saddest part about it all is that he appears to believe in all the rubbish he has written. You can find it here. Read it, it is a laugh a minute.
Even worse, the writer has taken to pouncing on newcomers to the CLL Forum and suggesting they read his website, to learn how to defeat CLL. Which we all know isn’t possible. Yet. This is the reason for this post, and some of the follow up ones I am planning over the next few weeks, because I think that this sort of nonsense really ought to be countered.
Rather conveniently, Haanse has given us a rather good “Ten steps to Healing” page on his site, which I think I shall take as my theme for some posts.
Step One in the list is “Speak To Your Creator”
I had one of the strangest conversations with my parents (bless em) this morning. They were adamant that they do not have my blueprints, but they seemed to imply that they had great fun creating me. I shall not have that type of conversation with them again !
If, like me, you have suffered from night sweats during the course of your illness, you will understand what a truly miserable experience it is.
I’ve been suffering from them for years, going way back before my diagnosis, and I really didn’t think anything of it. When you wake after a bad dose, it is like you have gone straight to bed after a shower, without bothering to get dry first. The sheets, pillows, quilt or blankets, sleeping companion and dog will also be drenched. The only thing to do at this stage is to shower, change the bedclothes and sleeping attire, companion if you wish, and blow dry the dog.
This can happen a number of times per night.
I have tried a number of strategies to alleviate the situation over the years. In the UK winter, removing bedclothes and pajamas until the sweating stops leads to hypothermia, and yet the sweats take over once warmth has returned. No happy medium is possible.
When I lived in the tropics (Colombo, Sri Lanka) I had built in industrial strength aircon in my apartment. The bedroom unit had settings that varied from Lotus to Aerosmith and the oddest was the one that varied in intensity from high to low causing wake ups at the peak times. I alternated between sweating, shivering and soaking.
In Morocco, sub-tropical, the mixture of windows and doors wide open and mild night temperatures meant I could sleep reasonably well, but still woke up sodden. A soft fluffy towel over the pillows always helps a little.
Chemo is said to help, though it hasn’t in my case, but it’s probably a little sledgehammery to get chemo just to stop the night sweats.
So, has anybody got a cure?
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.