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.
It’s ironic that as I write this, I am sitting in a waiting room, waiting to see a member of the Health Professions Council (HPC) in a professional capacity. If he’s as on the ball as Stuart Jones, then I’m sure I’ll be in safe hands.
Jones, who you’ll know if you are reading this, was recently up before the beak at the HPC in a Fitness To Practice (FTP) disciplinary hearing, following a spat with a pill peddling Dr from North Wales.
Myhill had amended her website sufficient for it to be safe
Jones had complained to the GMC about the terrible medical advice which contravened all sorts of best practice guidelines and procedures on the DrMyhill website. The GMC launched a FTP investigation into Myhill, based on Jones’ complaint, and another complaint from a GP practice concerned about the way Myhill was prescribing for one of their patients. The story is a long one, but the GMC, during the course of their investigation, suspended Myhill, questioning her understanding of the seriousness of the complaints, obviously considering it unsafe to allow her to prescribe medicine, forced her to make huge changes to her website. Eventually The GMC, satisfied that Myhill had amended her website sufficient for it to be safe, allowed her to practise again.
Over the years, Myhill has been the subject of numerous complaints to the GMC about her suspect practice of medicine, has been the subject of numerous FTP hearings, and there are still a number of complaints pending at the GMC against her. I await developments on those.
Myhill’s medical career centres around the treatment of ME/CFS patients, seemingly based on a rather poor scientific paper published in an obscure internet only journal in 2009. That paper deserves a blog post all of its own, and I shall make no more comment about it today.
Myhill bragged that a patient had killed himself
Myhill appears to have created a huge dependency in her patients, who seem to believe she is a guru in the treatment of ME/CFS, something seriously discouraged by best medical practice. Indeed, in Jones’ FTP hearing, Myhill bragged that a patient had killed himself, believing that the GMC was going to prevent Myhill treating him. This isn’t something a Doctor should be bringing the attention of enquiring minds, and has yet to be confirmed.
The tactics employed by the Doctor when defending herself against complaints, both current and past, has been to ignore the issues raised by the complaint and instead mount a publicity campaign driven by patients telling everybody who will listen how wonderful she is. It has also been a standard tactic to bombard the GMC with support letters and petitions based on this cult of personality she encourages. Indeed, it is well known that death threats have been issued against prominent CFS/ME researchers who annoy the more vociferous activist victims. The frothing hate of Myhill supporters encouraged by Myhill was seen time and time again on the bad science forum, as they wrote of how cruel Jones was being to their saviour, and them. This despite the fact that time and again it was patiently explained that Jones’ complaint was nothing to do with ME/CFS, but about the dangerous advice that was being given on the Myhill website. Examples of this behaviour will be the subject of future posts. Some of the vitriolic abuse makes Jones’ comments on the bad science forum look like compliments!
Wisely, Jones had opted to be anonymous in complaining to the GMC, but as is now well known, the GMC failed rather badly in their duty to Jones to keep his identity secret, and Myhill and her patient cabal sought vengeance in a particularly spiteful way. Myhill and her supporters knew that Jones was complaining anonymously, and took advantage of the errors of the GMC. Nobody with a shred of decency would have behaved in this way, but time and again, extremist CFS/ME victims have demonstrated these rather spiteful traits.
‘Myhills Manic Minions’ press release
So what is the take home message from the HPC hearing on Jones behaviour? As Pat Endicott (one of “Myhills Manic Minions”) has last week prepared a rather crudely spun press release on behalf of Myhill, I thought I could present a more balanced view. It must be remembered that the original Myhill complaint suggested that Jones had been ‘misleading and disparaging’ when commenting anonymously on the Bad Science Forum. This was considered, and in the weeks leading up to the hearing, dropped, by the HPC. This sent an important message to Myhill – that Jones comments were not misleading, that no HPC action was necessary regarding the veracity of the comments.
Message number one from the HPC – Jones not misleading on Bad Science Forum.
Message number two to Jones – It is rude to call people names anonymously, and we don’t condone it.
Message number three to Myhill – As a nod to respect between professions, we imposed a sanction on Jones, in the lowest category, and made it lower than normal, but your complaint was incredibly petty.
Message number four to Jones – Don’t do it again. +++ slapped wrist +++
Post Script : Since I began writing this post, that well known leading edge newspaper “the Romford Recorder” published, then withdrew, a story more or less copied from the Endicott press release. A much more balanced version has since appeared. I wonder why?
In a blog post entitled “Professional Councils And The Chilling Of Dissent” Jayqueaitch points out that the recent Health Protection Council (HPC) decision to impose a Caution on the record of Stuart Jones is sending a pretty clear message to Health Professionals. The HPC have a handy website, and I decided to have a look at the complaints section. People represented by the HPC are a badly behaved lot, judging by the number of FTP hearings held in the last couple of months. The sanctions imposed on this badly behaved bunch vary tremendously, and I have detailed below the offences of those that received a similar judgement to Jones in the last couple of months. This should give us an idea of how the HPC view instances of misconduct, and how they compare.
- A Physiotherapist, who amongst other failures of administration, lost the files of 25 or 26 children; the confidential records of 25 0r 26 patients were mislaid; received a caution impinged on her record for two years.
- A drunken Biomedical Scientist received a five year caution.
- A Radiographer who did not attend to all the patients assigned to her, and failed to keep adequate records was cautioned for one year.
- A Paramedic who failed to maintain adequate records, viz a patient report form, and sexually assaulted a colleague by touching her legs inappropriately, and kissing her; received a five year caution.
- A Radiographer breached patient confidentiality, by looking up a patient’s details on the internet in a clinical area and entered into a wider discussion of the patient’s details whilst the patient was being scanned, and bullied and intimidated, ignored, ridiculed, made derogatory comments about and stated that they “would get your own back on a colleague” or words to that effect. Said colleague had been a witness in a previous disciplinary case. Caution for two years.
- A Biomedical Scientist accessed a patients electronic test results without her consent and without a clinical reason to do so; and breached patient confidentiality; and subjected the same patient to verbal bullying and harassment in anticipation of her complaint; received a three year caution.
- A biomedical scientist accessed a patients electronic test results without her consent and without a clinical reason to do so; and breached patient confidentiality, received a three year caution.
- A paramedic who breached a Court imposed a non-molestation order from a Magistrates’ Court was given a conditional discharge and ordered to pay £100 costs by the court, received a two year caution from the HPC.
So, what terrible crime had Mr. Jones committed to have him hauled over the coals of an HPC disciplinary hearing? How about losing a whole load of confidential patient records? Breaching patient confidentiality and bullying colleagues? Breaching a Court Non-Molestation Order?
No, he’d made “disparaging comments” on an internet forum, anonymously. On another internet forum, ironically for Health Professionals, you can find a rather well made observation.
Perhaps he should have failed to attend some patients he’d been assigned, and failed to keep adequate records. He’d only have received one year.
On the HPC website, it states – “Our fitness to practise process is designed to protect the public from those who are not fit to practise.” At the moment, your fitness to practise process looks like it is designed to protect dodgy doctors rather than the public. Seriously HPC, you need to get your priorities right.
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 !
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.