Dr Sarah Myhill faces another GMC Hearing

[meandthecat]

Encountering Dr Myhill online was the beginning of my recovery; from the closed ranks of Doctors denying what I was experiencing, light glimmered through the veil of their deception.
Her importance for us is not just her effectiveness but her bravery in facing down the bully boys of UK medicine. It seems that to acknowledge ME is heresy and The General Medical Council is more concerned with policing orthodoxy than the health of millions of UK citizens. and it is millions who are struggling with similar symptoms, a refusal to rationally diagnose and discriminatory health care.

D-ribose helped me manage, B-12 transformed my stamina, my GP's were content to follow protocol and let me rot.

Once, doctors attempted to heal their patients and would try whatever they could, now in this brave new world of evidence-based medicine those that manufacture the 'evidence' call the tune and GP's are terrified of falling foul of the powers that be.
It maybe that GP's have little choice or know no better but either way they collude with a scandal which stains healthcare here.

 

[barbc56]

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 NIC'E 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

What I meant in my statement is that I don't go to alternative doctors. Period. It's MY personal choice. I take medications for my symptoms and some lifestyle changes such as pacing, etc. I would find being offered only CBT/GET to be insulting. However, I don't believe in taking supplements if you don't have a deficiency nor taking tests that you have to pay for out of pocket as they're not scientifically founded. I disagree with a lot of her medical philosophy and feel it's indeedI outdated. These are only a few of the things in her practice that would not make her a match for my medical needs.

It goes without saying that I don't live in the UK so it's not quite the same. But that doesn’t mean I don't understand nor have compassion as I do to the best of my ability without actually experiencing what goes on in the UK.

While I don't think it's your intent, this kind of criticism can be perceived as demeaning, divisive and my way or the highway which is about the last thing our community needs right now.

I believe we have room for different opinions when it comes to Myhill. I have no problems with you liking her and would kindly ask for the same respect.

Barb C.:>)

 

[justy]

You may or may not be interested in my opinion, but i feel that it is harsh to judge someone - whoever they may be, when you have no direct experience of them.

I think it also needs to be made very clear that Dr Myhill is not an 'alternative practitioner' or 'alternative doctor' She is a medically qualified Doctor in private general practice.

She has and does use 'medication' she is not against the use of drugs in her practice and uses them as and when necessary. The main difference is that she aknowledges that the modern world (diet, chemical exposure, stress etc) can play havoc with our bodies, and most especially if you have a chronic illness like M.E/CFS. She believes that the body needs to be given the best chance to heal by supporting it in the simplest possible way - diet, chemical avoidance etc, so that we dont harm our bodies further and have a greater chance to heal - rest, pacing, antivirals, antibiotics, supplements to replace deficiencies etc.

The tests that she advises are not, as far as i am aware, 'scientifically unfounded' and i wonder where you get this idea from? Many of them are normal lab tests - that you would otherwise not get on the NHS in the UK. Others, such as the mitochondrial profile function test were devised by Myhill et al,based on sound, peer reviewed, published research, that has been quoted by and is respected by other top researchers and clinicians in the field of M.E/CFS.

Some other of her tests i am not keen on, such as hair mineral analysis and provocation tests for heavy metals (much on these in quackwatch) BUT i was surprised to learn that other M.E doctors and researchers also favour these types of tests and believe in their validity.

Not all doctors are perfect - i haven't followed ALL of her advice, just the same as i don't follow all the advice i am given by everyone else. There are a handful of really good CFS/M.E doctors out there and i probably dont agree with everything they say either - but i dont denigrate all their work, espeically when i am not acquainted with them.

I spent over 17 years with no diagnosis, in various states of ill health, being told i was neurotic, depressed, anxious, hormonal, that i had 'issues' etc until quite frankly my mental health did begin to give way, as anyones would when they had been chronically sick for years; disbelieved and denigrated and not had their illness adequately investigated.

Dr Myhill offrered me a test, that showed how ill i was, that offered real proof that it was not ' all in my head' as so many believed, and from that point i have been able to begin to get better. I have followed some of her advice and not others, i have had some healing - mainly in the areas that she could see i had deficiencies in form her 'scientifically unvalidated tests'

She is the only one in the UK to have offered any hope or treatment to a very sick population of people. On top of that she has a very kind and caring manner and works very hard for her patients. Her website was put up so that she could help more people - as she was over run with patients wanting to see her - and also could help those patients at a lower cost - you do not need to be her patient ot have many of the tests and recieve a detailed report from her with suggestions for treatment. She has written a book, which is available to download, for free, which i know many have used to help recovery without even buying a test, because they could not afford even that. I know people who have fully recovered, just using her book and website.

Sorry for the long post - didnt mean to rant. I have been a patient of Dr Myhills and i wish to defend her work.
Justy.

 

[maryb]

Permission to post has been given for the following. It can be found on facebook as well.
The GMC have saved a little face in accepting what a good doctor she is, perhaps they would now like to use her sort of practice in the training of new medical students, we can only dream.......

Dear All
At a GMC hearing last week the GMC decided to place a Formal Warning on my practice of medicine. As you can see from the attached Determination, this was done because opinions expressed on my website were deemed to be contrary to National Guidelines.

At my first appearance before the Interim Orders Panel on 29 April 2010 my barrister said:

Dr Myhill “has found it appropriate and helpful to her patients to put advice and in particular advice which she has gleaned and learned in her practice and in her research and in her scientific work, on her website, but she is always ready and is keen to respond to criticism of it, and if there are specific matters which the Panel thinks are in any way objectionable, she will remove them”.

In the end there were only two pages of my web site to which the GMC objected. I took those down in May 2010.

On a positive note, I was pleased that the GMC in the determination said: “The Committee accepts that you are a committed, well respected and caring practitioner and notes the significant number of patients who use your website and hold you in high regard” and “It accepts that despite a number of previous investigations, you have a previous good history and no action has been taken on your registration”.

A Formal Warning does not impact on my practice in any way – I still have the full rights of a fully licensed doctor. I shall continue to strive to provide a high quality service to my patients as well as to disseminate information which I believe to be helpful to the general reader.

Best wishes

Sarah

 

[natasa778]

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.:>)

Since you seem to follow Bad Science forum closely, do those smart gurus there recommend any particular 'science based up to date bast practice doctors' that ME patients should go and see instead?

 

[Firestormm]

The tests that she advises are not, as far as i am aware, 'scientifically unfounded' and i wonder where you get this idea from? Many of them are normal lab tests - that you would otherwise not get on the NHS in the UK. Others, such as the mitochondrial profile function test were devised by Myhill et al,based on sound, peer reviewed, published research, that has been quoted by and is respected by other top researchers and clinicians in the field of M.E/CFS.

Some other of her tests i am not keen on, such as hair mineral analysis and provocation tests for heavy metals (much on these in quackwatch) BUT i was surprised to learn that other M.E doctors and researchers also favour these types of tests and believe in their validity.

Thanks for the post Justy and to Barb, too (those being the only two I have had time to read right now.

If anyone is able, could they please point me to the published science behind the mitochondrial test? Thanks.

I've heard a lot about it (well relatively speaking) and would like to review it myself if I am able.

Personally, I chose not to see Dr Myhil, and I think everyone's personal choice should be respected when it comes to named individuals and the treatments they prescribe.

I am sure she treats with her patients very well, as every GP should in this country, (she's done the GMC bit now) it is (as ever) how effective her particular protocols are that I would like more information on - especially this 'test' I have heard about for mitochondria and how the results are interpreted (as well as what is prescribed as a result if anything at all).

Hear a lot about mitochondria too. I've never really got myself up to speed with it all. Would like to take a look if you lot can help me out. Thanks.

 

[justy]

Hi Firestormm - here is a link to a PR discussion on the second published paper, including a link to the full paper itself.

http://forums.phoenixrising.me/index.php?threads/dr-myhill-publishes-second-paper.18229/

Some further discussion here
http://www.meassociation.org.uk/?p=11918

but i cant find links at t he moment to the first paper.

All the best, Justy.

 

[justy]

The first paper from 2009 -

http://www.ncbi.nlm.nih.gov/pubmed/19436827

 

[sianrecovery]

Sarah is the only doctor who has ever helped me. She freely admits that ME is a puzzling condition, and no one has all the answers. At least she's prepared to try. I worked in the NHS for a long time, alongside some pretty appalling doctors. No one ever tried to shut them down. Personally, I also have deep concerns about the effects of the repeated radiological doses from mamograms, and a radiographer who specialised in them told me she stopped having yearly mammograms when she was diagnosed with breast cancer, and believed they were implicated. She said she thought thermograms were better diagnositically anyway.
You found Marg's comments divisive you said Barb - I find yours insulting to my ability to pick a doctor. I'm not a fool, and I'm not easily influenced.

 

[barbc56]

Sarah is the only doctor who has ever helped me. She freely admits that ME is a puzzling condition, and no one has all the answers. At least she's prepared to try. I worked in the NHS for a long time, alongside some pretty appalling doctors. No one ever tried to shut them down. Personally, I also have deep concerns about the effects of the repeated radiological doses from mamograms, and a radiographer who specialised in them told me she stopped having yearly mammograms when she was diagnosed with breast cancer, and believed they were implicated. She said she thought thermograms were better diagnositically anyway.
You found Marg's comments divisive you said Barb - I find yours insulting to my ability to pick a doctor. I'm not a fool, and I'm not easily influenced.

Where in the world have I said people don't have the ability to pick a doctor, are easily influenced or called anyone a fool? I have made it perfectly clear that it's a matter of personal choice. I prefer doctor's that don't operate as Dr. Myhill's but that is my opinion. I do not play games when I write my opinions.

Do we really want a dogmatic community where we all have to believe in the exact same way? This is what I meant when I said I thought Mary's comments were divisive and rude by saying that I couldn't possibly understand what people in the UK are experiencing.

I might disagree with a person but there would be very few situations where I would say someone is a fool for making a personal choice.

IMHO, as I have stated before it appearsI that some are reading way too much into some posts as well as possibly seeing what they want to see because of preconceived notions such as anyone not supporting Dr. Myhill must not be a true believer in me/cfs. .

Nothing could be further from the truth. There is roomi in our community for different takes on issues that affect us. We are consumers when it comes to our healthcare and thus it's important to discuss all sides of an issue.

The bottom line is that we are all in this together and probably agree more than disagree when it comes to me/cfs.

You might want to read my post again keeping in mind what I have said in this thread.

Barb C.:>)

 

[Firestormm]

The first paper from 2009 -

http://www.ncbi.nlm.nih.gov/pubmed/19436827

Hi Firestormm - here is a link to a PR discussion on the second published paper, including a link to the full paper itself.

http://forums.phoenixrising.me/index.php?threads/dr-myhill-publishes-second-paper.18229/

Some further discussion here
http://www.meassociation.org.uk/?p=11918

but i cant find links at t he moment to the first paper.

All the best, Justy.

Thanks Justy. I will give them a go (again I must confess). Never seem to get the opportunity to read these things as thoroughly as I would like. So many papers so little time. Ahh... the life of me

 

[justy]

Hi Barb, i agree with you entriely that we muct all be free to make our own opinions about testing/treatment etc. I also think its very true that we must not slavishly follow dosctors just because they are all we have, or they treat us nicely, or are the only ones to take an interest in our plight. They are not gods or gurus, and some of us are helped - others have become worse - this is true of so many of our doctors and the treatments they offer.

We must make informed decisions. My post was aimed at informing, and i hope not devisive.

All the best, Justy .

 

[Wayne]

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.

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...

Thanks to the many posters who've taken the time to share some of their experience and/or perceptions about SM. It's all given me a better take on her as a person, and her seemingly compassionate (and humble) approach to treating pwME/CFS.

It seems quite apparent to me that any doctor/researcher who doesn't approach the complexity of ME/CFS without diverging from mainstream medical bias is probably not going to be able to help us all that much. In the end, we're all our own doctors, and should do what makes sense to us. Given what I've read on this thread about Dr. Myhill, I suspect she would agree with this.

 

[Insomniac]

I don't think you should delete any of your messages Barbc. You spoke out rightly. I think everyone attacked you rather unfairly. I did not say anything about it byt then you said you might delete part of your message. You can do if you want but I don't think you should have to.
Sarah Myhill made me worse. She ruined my digestive system and gave me EPD shots the wrong way. I've already written about it on this thread in some detail. She was completely uninterested in my worsening when I told her about it.. She's not a saint and not treating people for free. Seeing the GMC for talking some nonsense on her website isn't like seeing the inquisition or a huge sacrifice. Some of her website is wrong and some people are made worse by her treatment, Some better, some stay the same. Whatever.
I can live with the fact that she made some of you better while she made me and others worse. For others the treatment made no difference. The point is if someone critisies her they have the right to do that without being jumped apon like barb was and without having to delete their message or degerate into a quarrel.

A proper discussion has boths sides of the argument, that's why it's called a discussion.

 

[taniaaust1]

Here is just one example of out of date information.



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.

Natural Family Planning using the thermo?????? regulatory method (the method she was refering too. sorry Ive forgotten its exact name) is taught here in Australia by Natural Family Planning clinics too and the ones who teach this at the clinics all say its an just as effective method of birth control as what taking the contraceptive pill is if one is properly trained in the method and following the method. (The training for this involves the keeping of the natural family planning charts which monitor things and having them checked and going back for a while to the clinic to make sure one is monitoring ones cycle and reading it all right and doing everything correctly). I myself went throu that training and used that method as a birth control method for quite a time. Her info isnt out of date on that.

Its a pity when people knock something they dont know much about, when they havent compared the pregnancy rates of ones getting pregnant on the pill and ones who are properly trained in this other method using it for contraception in which its been proven to be just as protective as the pill is. I suggest if anyone wants to know more and studies which support this.. to contact your Natural Family Planning Clinic. (here in australia that isnt some kind of alternative thing but is a gov supported place).

note.. after hearing that i was using that method of birth control and had for quite a while (years).. my sister went and learnt it and has been successfully using it ever since.. she's now been using it for many years. (I dont need to any more as my current boyfriend has a vascetomy. My mother thou.. two of her pregancies she was using the contraceptive pill when she got pregnant). There are many people out there who are successfully using this birth control method.. its the ones who have never tried it and havent properly researched it who knock it. (This method isnt just about going by ones temp shifts but also looking at things such as mucus changes, cervix changes etc too.. to end up working out what ones safe times are).