Dr Sarah Myhill faces another GMC Hearing

[ukxmrv]

In the UK many GP's and hospital doctors follow the NICE guidelines and the type of treatment Dr Myhill offers is not included.

There has been huge arguments and a legal case brought by patients against the NICE guidelines but little sucess.

It's a postcode lottery with some GP's prescribing things like B12 and other refusing to do so.

But one doesn't need a GP to follow the Myhill suggestions as they are things that can be bought OTC or privately or from abroad. It boils down to money sadly.

 

[In Vitro Infidelium]

Thanks, it's such a different system
Barb C.:>)

Actually not so different, there is the same split between oversight and employement in both the UK and US, its just that in the US oversight happens via State level medical boards, rather than a single US wide body. Myhill is no longer contracted via the NHS (sort of equivalent to not being not being a billable service under medicaid/medicare), so her practice is wholly private and she is therefore not constrained by what the NHS contract for GPs would require her to provide. However like every other medical professional in the UK she is obliged to act with professional standards. The information published on her website, where she presents herself as a doctor, was found inadequate. Instead of simply taking the sound advice of her peers and changing the website content, Myhill insisted on a hearing at the GMC and upon questioning experts. Unsuprisingly despite all the effort of the hearing, the result was as any reasonable person could have forseen - Myhill has had to amend the website, and had a mark placed on her public record.

IVI

 

[Stukindawski]

I imagine Myhill is mostly guilty of being too small to be wrong as much as anything. But I don't know a lot about her, or wish to indict her on hearsay. It's difficult to know wrong from right in a profession where so much information is controlled by special interest, or too specialised for most of us to understand.

However, it is worth noting that the things that we want the most, are the things that can make us most vulnerable. I'd want to be very very sure before I'd decide whether or not to throw weight behind this doctor.

I've heard the criticism before that, there is a particular western habit of 'taking medicine when we are sick'. Are ME/CFS patients really ready to be taking medicine? None of us can truly claim to have been 'properly diagnosed'. I had B12 injections for a short while on the NHS and received no measurable benefit whatsoever. You might be able to demonstrate a B12 deficiency in a patient group, but what really happens to the person when that plunger is pressed in? I heard Myhill was prescribing D-Ribose on the basis of assisting the ATP energy cycle.

The same problems that apply to PACE apply to any other treatment. Really you need to compare accelerometer data over several years on a placebo controlled test before you can honestly recommend a treatment. The way I feel from day to day or week to week fluctuates by quite a distance. A mere co-incidence could fool me into believing a treatment is good for me.

I'll be beating myself over the head with http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770065/ for a bit

Edit: I just wanted to add in, that the effect of experience on an ME/CFS patient's health can also muddy the water of a study. In my early years I would have intense relapses due to high levels of activity.

 

[Insomniac]

None of us can truly claim to have been 'properly diagnosed'. I had B12 injections for a short while on the NHS and received no measurable benefit whatsoever. You might be able to demonstrate a B12 deficiency in a patient group...

... The way I feel from day to day or week to week fluctuates by quite a distance. A mere co-incidence could fool me into believing a treatment is good for me.

Spot on. That is what has happened to me.

What you describe is also written in the book "Trick or Treatment" about alternative medicine. It says that many chronic illnesses, (not just M.E) have a fluctuating cyclical nature. There are periods where you feel better than others. If someone happens to have a better period after taking homeopathy for example, they'll say the treatment helped them when it didn't.

 

[barbc56]

Spot on. That is what has happened to me.

What you describe is also written in the book "Trick or Treatment" about alternative medicine. It says that many chronic illnesses, (not just M.E) have a fluctuating cyclical nature. There are periods where you feel better than others. If someone happens to have a better period after taking homeopathy for example, they'll say the treatment helped them when it didn't.

I really like this book and use it quite often as a reference book.

Barb C.:>)

ETA I also had a B12 deficiency and received injections. Didn't notice a difference in how I felt but at least my B12 level is in the normal range.

 

[barbc56]

Is there an embargo on the outcome of Dr. Myhill's hearing. I did read somewhere that she got a warning which will be on her record.

I don't get FaceBook. Can anyone point me in the right direction to get information?

 

[taniaaust1]

There has to be better doctors than her.

What better doctors then her are in the UK? I personally havent heard of any other good doctors at all who are treating ME patients there.

I are sorry thou that you did have a bad experience with her. She's thou helped so many of us (including myself with her site advice)

 

[maryb]

You are right tania without Dr Myhill it would have been years before I knew I had ME, she and Dr Andy Wri-ght diagnosed me with it at my first consultation, I had been ill for 6 months at the time. I will always be grateful to both of them, as for UK GPs you're right again a bunch of more useless, overpaid individuals you'd never find anywhere else on the globe, of course our NHS A & E departments are first class but the local GPs forget it.............

 

[Shell]

I have mixed feelings about Dr Myhill, but there's certainly a lot of good things coming from her. I woulldn't touch Reiki with a barge pole but I can understand why Myhill would recommend it as so many people report benifits.
As for chemical contraception - the knowledge of the side effects are very well documented and WHO have classed it as a Class 1 carcinagen (sp?) because of it's firm connection with breast cancer. It is also well documented to age the cervix. So, if Myhill is refusing to prescribe it for people who are already quite sick enough, then good for her.

 

[Stukindawski]

I used to be angry at GPs for offering me very little. But I have some sympathy for them. Anger although sometimes justified, sometimes hard to avoid, can also be intoxicating and self indulgent. This is a judgement I put upon myself as much as anything. For the most part the GP has a 'routine' and practice guidelines that bind them to that particular routine. Those guidelines have been so polluted by, shall we say 'bigger interests', with things like 'evidenced based medicine' and 'biopsychosocial' claptrap that they tend to have an effect on what a GP can do.

Since a GP's role is not necessarily specialist (they identify and help treat broad range of conditions), if a GP has a guideline from NICE which says, just send you for CBT/GET, then that's what will happen. I've spoken to several GPs and none have disagreed with me when I made the point that CFS isn't exactly a diagnosis, but more a vague classification. So I also can't help wondering if actually diagnosing CFS for GPs hasn't just been because of some sort of ignorance or prejudice, but more a scientific rejection of something illogical.

I would imagine the role of GP is one which relies heavily on authoritative information.

Which is what makes me glad some folk around here are working to present information for the next NICE guidelines review.

Arguments do not have to be won on the day, if anyone finds themselves disagreeing with a GP but get a little lost in the banter (I run out of steam sometimes, the 'ol fog sets in), you can always resolve to come back next time with some evidence, help change a mind or two.

 

[barbc56]

I have mixed feelings about Dr Myhill, but there's certainly a lot of good things coming from her. I woulldn't touch Reiki with a barge pole but I can understand why Myhill would recommend it as so many people report benifits.
As for chemical contraception - the knowledge of the side effects are very well documented and WHO have classed it as a Class 1 carcinagen (sp?) because of it's firm connection with breast cancer. It is also well documented to age the cervix. So, if Myhill is refusing to prescribe it for people who are already quite sick enough, then good for her.

From the National Cancer Institute.
http://www.cancer.gov/cancertopics/factsheet/Risk/oral-contraceptives

A number of studies suggest that current use of oral contraceptives (birth control pills) appears to slightly increase the risk of breast cancer, especially among younger women. However, the risk level goes back to normal 10 years or more after discontinuing oral contraceptive use.

Women who use oral contraceptives have reduced risks of ovarian and endometrial cancer. This protective effect increases with the length of time oral contraceptives are used.

Oral contraceptive use is associated with an increased risk of cervical cancer; however, this increased risk may be because sexually active women have a higher risk of becoming infected with human papillomavirus, which causes virtually all cervical cancers.

Women who take oral contraceptives have an increased risk of benign liver tumors, but the relationship between oral contraceptive use and malignant liver tumors is less clear.

The results of population studies to examine associations between oral contraceptive use and cancer risk have not always been consistent.

However, nearly all of the increased risk was seen among women who took a specific type of oral contraceptive, a “triphasic” pill, in which the dose of hormones is changed in three stages over the course of a woman’s monthly cycle.

(my bold)

There is a vaccine for HPV which not only prevents cervical cancer but also anal cancer as well as other types of cancer. I have a friend who had anal cancer.

GlaxoSmithKline's Cervarix and Merck & Co's Gardasil protect against cervical cancer, the second most common cancer in women worldwide. But various strains of HPV also cause anal, penile, head and neck cancers.

http://www.reuters.com/article/2011/08/22/us-cancer-anus-idUSTRE77L7A020110822

It's important to not only weigh the risks and the benefits but to realize that the risks aren't as straight forward as it would first appear. There are other factors such as earlier puberty, age of birth of first child, that may also contribute to the higher rate of breast..

It's personal choice.

Barb C.

 

[Mark]

I guess my views on female choices about contraception are neither here nor there, and it's certainly a matter of personal choice.

But as far as Dr Myhill is concerned, and the advice about contraception on her website which she has been forced to remove, to me all she really seems to have done is repeat the concerns I've heard anecdotally from women regarding the effects of the pill on their general health. The only news here, really, is that doctors are not allowed to say such things.

Regarding the scientific data on cancer risks, and whatever else we may happen to have data on (however inconclusive), I think it is really only a small part of the story as regards the health effects for people with ME/CFS. I would conclude from the quotes Barb mentions above that there seems to be good evidence there that the pill may have other effects on women's health. The point about the cancer studies is not just the cancer risk, it is a question of what else the pill might be doing, given that it seems to have these effects on incidence of cancers. I think it's a decent logical deduction from the above that there is a likelihood that the pill may have other negative (and indeed possibly some positive) effects on women's health.

If Dr Myhill's clinical experience, based on treating people with ME/CFS for many years, is that the pill carries particular risks for people with ME/CFS, and she wishes to recommend alternative contraceptive choices, then bearing in mind that there is actually no scientific data at all on the effect of the pill on people with ME/CFS, and therefore the impressions of physicians are all we have to go on, I find it rather disturbing that she is not allowed to publicly state her opinion on the matter.

Anyway, she has been forced to remove the section explaining her opinion about this subject on her website:
http://drmyhill.co.uk/wiki/Contraceptive_Pill_and_HRT_-_don't_take_them

...but of course it is not possible to enforce the removal of her views from the internet, so anyone interested in those views can still access them with a little googling and there's nothing that Dr Myhill or anyone else can do to prevent that now. So anybody may judge for themselves whether it's reasonable that a registered physician may not make the following observations even if they believe them, and they can assess for themselves the seriousness of Dr Myhill's offence:
http://lymeaware.free.fr/lyme/Websave/drmyhill/www.drmyhill.co.uk/www.drmyhill.co.uk/wiki/Contraceptive_Pill_and_HRT_-_don't_take_them.html

This page also claims there were methodological flaws in the studies referred to above, and it makes what seems to me quite a reasonable argument.

Anyone else interested in the case(s) against Dr Myhill may explore the previous version of her site through the above link and decide for themselves whether it was rightly a disciplinary matter that she said these things. Anyway, it seems it's been decided, and it seems the opinion in the link above is an opinion that physicians aren't allowed to express.

I'm pretty sure there is no scientific data whatsoever regarding the effect of the pill on women with ME/CFS. So with no scientific evidence and no medical opinion available (in the UK), I guess that leaves anecdote, the internet, and one's personal hunches as the only sources available for a decision on this particular question.

 

[barbc56]

Actually, my view is that she can write anything she bloody well wants on the internet but that's a separate issue than how I feel about her medical practice. I fine her views very disturbing trend as well as medically dangerous and don't feel she uses best standard practices. I'm not saying that real doctor's never do this, as in PACE, but I think the odds are much better by going to a doctor who is science based and with medical knowledge that is up to date.

Barb C.:>)

 

[barbc56]

Here is just one example of out of date information.

Natural Family Planning
From DoctorMyhill

​

Natural family planning is a method of contraception teaching women how to recognise on which days of the month they are fertile and on which days of the month they are not fertile in order to avoid pregnancy. There are clear physical signs which one can learn to recognise which tell you when you are ovulating. When the woman is not fertile, there is a firm plug of mucus in the neck of the cervix, which means that no sperm can enter the womb. This is the main way in which the progesterone only "mini pill" works.

It is obvious when menstruation takes place - the first day of menstruation is called Day 1 of the cycle. The most usual pattern is for women to ovulate on day 14 of their cycle. They are generally fertile for about 5 days before ovulation and two days afterwards. During this period of time the cervical mucus changes from a thick, slightly sticky clouded mucus to a thin, clear, stringy and slippery quality. During this time also the cervix descends partially down the vagina and the neck of the cervix opens slightly. Furthermore, at ovulation time the basal temperature, as taken first thing in the morning before rising, rises by ½ to one degree.
Learning to recognise these signs has to be taught by an experienced instructor. There are many books on the subject but if you wish to learn this technique of natural family planning then a list of NFP teachers is available on Fertility UK Website.

This is a very important technique because, once learned, it will stand you in good stead for life. It does not rely on any artificial barriers or hormone taking. Obviously the pill, the mini pill and many coils contain hormones with potentially serious long term effects.

Stand you in good stead?? I wonder how many babies out there have the name "good stead".

ETA She does, however, think barrier methods such as condoms are effective.

 

[Mark]

Actually, my view is that she can write anything she bloody well wants on the internet

Well, I'm glad, and I agree, she should be able to, but clearly she can't.

but that's a separate issue than how I feel about her medical practice. I fine her views very disturbing trend as well as medically dangerous and don't feel she uses best standard practices. I'm not saying that real doctor's never do this, as in PACE, but I think the odds are much better by going to a doctor who is science based and with medical knowledge that is up to date.

This, I don't get. Bearing in mind that the GMC have been after her for years - what is it, 6, 7, or more unsuccessful attempts to get her struck off? - yet the only issue concerning her practice that was brought up at the last 2 hearings concerned the remote recommendation of a B12 injection. I don't recall any other questioning of her medical practice, ever, other than B12 injections. Everything else in the case against her concerned the contents of her website. People are trying really hard to question her medical practice, is this stuff about B12 injections all they can come up with? Is there anything else in her medical practice that's questionable? Do you dispute prescribing B12 for people with ME? And what evidence do you have of anything "medically dangerous" in her views?

I also don't get this bit about "best standard practices" and "science based" and "medical knowledge that is up to date". You do realise that for ME/CFS means "CBT and GET and that's it" in the UK? Surely you're not recommending that as a treatment?

In the UK, the standard treatments for ME/CFS are pretty much as risky as they could be - recommending the very thing that turns people from very ill to permanently bedbound - and their claim to be "science based" and "up to date" is so farcical that it brings the very concepts of modern medical/scientific practice and "evidence based medicine" into disrepute. Dr Myhill would have to go some to offer a worse alternative than the standard treatment that's dished out to us, and I haven't seen any evidence that she does.

 

[barbc56]

If you look in my post above, I specifically refer to the PACE study with CBT/GET. Yes I get that it's different here in the states and know how that puts patients in the UK in a bind. A horrific bind.But that still wouldn't make me turn to a doctor like Myhill.

I'm not sure I want to be drawn into a debate other than to state that I believe her medical views leave a lot to be desired, just as I would all alternative practicioners. Yes, all.

I've cited a few examples and I think we will just have to agree to disagree.

Barb C.

ETA There is a thread on Bad Science which explains why many of her treatments are inaccurate and some even dangerous. It's actually pretty tame and you might be surprised to find the thread very informative.

http://www.badscience.net/forum/viewtopic.php?f=3&t=15882&hilit=Dr. Myhill

 

[Mark]

Sorry to find myself following you around again Barb. I have no intention to pick on you, honest, we just happen to be really interested in all the same subjects but with very strong and differing views on them. Nothing personal.

If you look in my post above, I specifically refer to the PACE study with CBT/GET. Yes I get that it's different here in the states and know how that puts patients in the UK in a bind. A horrific bind.But that still wouldn't make me turn to a doctor like Myhill.

I'm not sure I want to be drawn into a debate other than to state that I believe her medical views leave a lot to be desired, just as I would all alternative practicioners. Yes, all.

She's not an alternative practitioner, she's a registered general practitioner. I've seen lots of alternative practitioners too and there's a big difference. She diverges from orthodoxy on a number of points, so she is 'alternative' in the sense that she doesn't always agree with the orthodoxy. By that definition, anybody in the UK who offers anything other than CBT/GET is "alternative".

I've cited a few examples and I think we will just have to agree to disagree.

You've cited a few examples of quotes from her website. Whereas I've been treated by one of her colleagues and followed some of her protocols and she's the only one of many GPs, in 18 years, who's actually helped me. I also personally know several people who have been treated by her - one of whom was completely sceptical throughout but made an almost complete recovery having been sick since childhood - and they were all helped and speak very highly of her.

So I'm talking from personal experience of how good she is as a doctor, whereas you're talking from a purely theoretical basis of comparing what she says with what the books say. And I do understand that her views differ from what the books say, and I don't believe the books are a reliable source on those subjects, for well-researched and rational reasons: I simply don't trust the science in areas where industrial giants have a documented financial interest in the research into the effects of their products on human health. That science is systematically biased in very obvious ways (you only have to look at the funders of the Science Media Centre to see how utterly corrupted and unreliable those areas of modern science have become), and if she chooses to be sceptical about it and dig deeper, then good for her.

ETA There is a thread on Bad Science which explains why many of her treatments are inaccurate and some even dangerous. It's actually pretty tame and you might be surprised to find the thread very informative.

http://www.badscience.net/forum/viewtopic.php?f=3&t=15882&hilit=Dr. Myhill

I read all that ages ago, and mostly it just reinforces my views of her approach. It doesn't explain why her treatments are "inaccurate", it sets out areas where her views diverge from the orthodox interpretation of the science, which I think is an important distinction. What jumps out to me on that thread is how it's a series of "here's what she said", "here's what the book says", "therefore, obviously, she's wrong". (Never a pause for thought on that point...just a complete lack of scepticism). As if she doesn't know what the book says, and just happens to have read some other books and formed a different opinion as to who to trust.

To me it's striking on that thread how often snippets of quotes aimed at a general audience are picked apart on a technicality when the point she is making is quite valid and is just being communicated in a way that's easier to understand. Other things that are striking for me are things like the "cot death" argument - that's striking to me because I actually formulated the hypothesis of cot death being caused by a combination of fungi and flame retardants on mattresses quite independently and based purely on my own experience over decades figuring out what caused me certain problems sleeping (or trying to sleep) and what knocked me out for 14 hours at a stretch. I then read up and researched some historical stats on flame retardant usage and the stats on cot death incidence and the matches are really striking: you can put the two graphs side by side and it's "OMG". She's the first practitioner I've heard explicitly repeating my theory though. On stuff like that, I don't mind if her interpretation differs from the official scientific view because I already suspect she's right in what she's saying. And I know there's scientific evidence on her side, and differing industry-backed scientific evidence on the other side...

We are dealing here with a "Science" that is fatally skewed by industrial interests on the one hand, and an expert in environmental medicine on the other. If the scientific evidence on such matters could be trusted as if it really were objective and unbiased, it would be a completely different matter. I don't think Dr Myhill is perfect by any means - I suspect history will show she was dead wrong on some points, but dead right on others and the truth lies somewhere in between. But whenever I do visit BS (holding my nose and ducking in as long as I can bear it) I find the implicit and unquestioning trust in what mainstream medical science has to say on matters of environmental health just mindboggling stupid and naive. These are people who can't see a single thing wrong with the PACE trial even if you take them through it all. The idea that these people, who seem to blindly follow whatever industrial science tells them about how their own products affect human health, call themselves "sceptics", is the worst joke of all. What on earth is 'sceptical' about doubting everything except what the boss says? What is 'sceptical' about already knowing all the answers because you've got a big book that tells you what's true, and treating anyone who has a different point of view with automatic (and vicious) contempt? Can't get my head round that one...I guess 'sceptic' is intended ironically in such cases...

But I suppose you're right on agreeing to differ, because we've been round these kind of arguments before and neither of us have changed our views...like I say, please don't take it personally, these subjects just tend to wind me up...

 

[SilverbladeTE]

Today's heresy, is tomorrow's orthodoxy

The environmental health studies/outlooks are often complete BOLLOCKS and lies
because industry has made damn sure ot skew them (see the pharma corps and how now even mainstream science is beginging to admit most of the studies related to profit making drugs are bullshit)
for decades those bastards said Organophosphates were safe, well bullshit!
They are the nastiest chemicals known to Man, short of Uranium Hexaflouride

http://www.theecologist.org/News/ne...ten_sheep_farmers_poisoned_by_pesticides.html

Only in recent years have cracks started to appear in that wall of bullshit, with E.U. trying to clamp down on use of pesticides and mercury and of course, the UK complains "oh NOES! bad Eurocrats! Stinky foreigners trying to ruin British industry and profit!! "
http://www.theecologist.org/News/ne...ter_rules_on_pesticide_and_crop_spraying.html
Gawd damn scum is what our system is
From bits and bobs I've read over the years I suspect one day we'll realize organophosphates are some of the most potent and dangerous immune system modulators and carcinogens

always loved it bakc in 1980s, how farmers were FORCED to use sheep dip, by law, and the politician who helped make that law, after he left office, went onto a nice contract with the chemical company who made the sheep dip
meanwhile more and more farmers suffered ME like illness and blew their brains out with their shotguns

So frankly, you can take the British Establishment, the pharma, aggro-chem and much of the safety standards bodies and shove 'em up their own arses!

UK is rotten with as I keep saying, sick, incestous (in terms of close associations/introverted otulook/elite backgrounds) webs of corrupt bastards, who make damn sure that anything that causes trouble is covered up.
UK's government has long been "democracy by concent", which has genuine good points, but unliek US (democracy by law) it means it's far easier for things to covered up
as time rolls on corruption sets in and rots out the heart of any system, hence UK being older and being so powerful before the USA's turn to be a superpower, our system has rotted to the core. It is only stopped form becoming tyranny by a general british dislike of extremism and "reasonability"
the Uk is run by "professional classes", folk who've got damn little understanding of the realities, or suffering, their bullshit causes, very few folk today in pwoer, less so that at any time form WW2, are form "ordinary" or Science backgrounds.

USA has had long running fight with power/industrial corruption vs safety and encironmental issues, which can be seen clearly with the strip mining techniques of water jets polluting rivers being banned (sigh, I can't recall the name of that now), but such victories too have fallen by the wayside as the corproates/elite start to rot out the safety and honesty of governance (see coal mining issues for example, obvious lessons learned form a century ago have refused to be heeded so one day, catastrophy is inevitable in riverside ocmmunities with entire hills torn out from the inside)

 

[maryb]

barbc56 you said 'A horrific bind.But that still wouldn't make me turn to a doctor like Myhill'
How can you make statement like this about what is happening in the UK. No its not a bind, actually its our lives we're talking about and I resent people assuming they know what they'd do if they were in this situation.
It is impossible to understand what its like here, we have NOTHING in terms of health care for ME other than PACE and GET. We get treated for any health concerns that come along and for serious conditions regarding heart attacks etc the NHS is brilliant, but GP's who take ME seriously as a physical illness are............ well nowhere to be found, so try to imagine that if you can.
Anyway not a lot will change your mind so we'll carry on thanking the lord we have doctors like Sarah My-hill who is prepared to stick her head up out of the big pot of money that the NICE conforming GPs have their head in, and you carry on assuming that you have some idea of the hell it is living in the UK with ME under the NHS/NICE dictatorship

 

[Shell]

The more I read about Sarah Myhill the less my feelings are mixed and the more I support her.