What's your opinion of Dr Myhill?

[Nielk]

@keenly We get the idea you like Dr. Myhill and that's fine but it's your opinion. A more effective post would be if you could tell us what practices you do like and if they are science based. Actually, just your opinion would be fine, as long as you say it's your opinion and back it up. But opinions may be different than facts and science.

The title of this thread is - what is your opinion of Dr. Myhill?

 

[TiredSam]

@Kina, shame on you, did you forget our own PR superhero @TiredSam? Of course he's lying down, but it's rather apt tfor this forum

Did somebody call?

 

[barbc56]

The title of this thread is - what is your opinion of Dr. Myhill?

Yes. I was editing and two more posts were written.

You might want to read my edit as I changed it that opinions are fine just label them as such.

 

[keenly]

Gosh when I googled fat biopsies for pesticides, the only revlant site was Dr. Myhill. Most of the others were about breast biopsies. If anyone finds a citation I missed, let me know.

http://www.drmyhill.co.uk/wiki/Fat_biopsy_for_pesticides_or_Volatile_Organic_Compounds

I'm still looking.

@Kina, shame on you, did you forget our own PR superhero @TiredSam? Of course he's lying down, but it's rather apt tfor this forum.

@keenly We get the idea you like Dr. Myhill and that's fine but it's your opinion. A more effective post would be if you could tell us what practices you like and if they helped you. Just your opinion would be fine, as long as you say it's your opinion and back it up. But opinions may be different than facts and science.

The biopsy was not for pesticides, it was for a multitude of toxins, it just picks up pesticides which DO reside in fatty tissue.

Why do you not say to the person calling Patricia Kane names?

 

[barbc56]

Almost forgot this.

@keenly If you think anyone here is calling anyone names, report it. Just remember the saying pot meet kettle.

.

 

[Undisclosed]

PESTICIDES. I know this for a fact, I have had a fat biopsy done myself.

How do we rid the body of this?

It's unfortunate that you wasted your money on a fat biopsy. We are chronically exposed to many chemicals mainly through the food chain eg organochlorine pesticides, polychorinated biphenyls. Because they are lipophilic or attracted to fat and because many are metabolized very slowly, they end up in body fat tissue. In this day and age, it would be odd not to find these things in the fat cells. One should just assume they carry these things in their fat cells. Unless you rapidly lose a lot of weight, it usually isn't a problem. It's another way that our body removes 'toxic' stuff.

Once again Dr Myhill states:

Providing an abundance of clean oils helps to displace oils in the brain which hold polluting heavy metals, pesticides, volatile organic compounds etc. That is to say, these "clean" fats will displace "dirty" fats and also help detoxification.

Instead of posting insulting comments, why not provide some research that shows how 'clean' oils displace 'dirty' fats in the brain. I wonder how this is measured. This isn't how the body works. I have read where phosphatidylcholine breaks down fat cells -- would you want this -- releasing all those nasty organophosphates into the brain.

Instead of calling members morons, why not use your verbal skills to provide something that supports what Kane and Myhill are saying. Maybe we should move on in this thread to discussing what information is good on Myhill's site and what isn't so good. It isn't all bad. Some is quite relevant and useful, other information not so much.

I have reopened this thread with the caveat any further off-topic posts will be removed immediately.

 

[keenly]

It's unfortunate that you wasted your money on a fat biopsy. We are chronically exposed to many chemicals mainly through the food chain eg organochlorine pesticides, polychorinated biphenyls. Because they are lipophilic or attracted to fat and because many are metabolized very slowly, they end up in body fat tissue. In this day and age, it would be odd not to find these things in the fat cells. One should just assume they carry these things in their fat cells. Unless you rapidly lose a lot of weight, it usually isn't a problem. It's another way that our body removes 'toxic' stuff.

Once again Dr Myhill states:



Instead of posting insulting comments, why not provide some research that shows how 'clean' oils displace 'dirty' fats in the brain. I wonder how this is measured. This isn't how the body works. I have read where phosphatidylcholine breaks down fat cells -- would you want this -- releasing all those nasty organophosphates into the brain.

Instead of calling members morons, why not use your verbal skills to provide something that supports what Kane and Myhill are saying. Maybe we should move on in this thread to discussing what information is good on Myhill's site and what isn't so good. It isn't all bad. Some is quite relevant and useful, other information not so much.

I have reopened this thread with the caveat any further off-topic posts will be removed immediately.

Irony.

I have not posted insulting comments, that would be those who hate certain doctors. I am very positive and supportive of those trying to help people.

Back in the 1980s the Environmental Protection Agency (EPA) conducted a program called the National Human Adipose Tissue Survey (NHATS).

They discovered that all human fat samples contained traces of Four industrial solvents and one dioxin. Nine more chemicals, including three more dioxins and one furan were found in more than 90 percent of the fat samples. And on average, 83 percent of the samples had PCBs.

Now if you think one can not help facilitate the removal of environmental toxins by eating essential fatty acids, that is your opinion, God bless you, but to to call doctors vile names and become hostile is not needed. I find that very insulting. Just disagree and relax please.

If a doctor, or anyone makes a wrong statement, that does not make them a crank, quack, idiot, con artist.

God bless

 

[SmokinJoeFraz93]

As I live in the U.K., and as my most upsetting/major symptoms are due to mitochondria dysfunction, I stumbled across Dr. Mayhill.

I see passion and someone who knows quite a bit when it comes to the mitochondria. And what she does say, 'makes sense'. So I decided to spend a lot of money on supplements that herself and other specialists/scientists had recommended.

It's been scientifically proven that there is a mitochondria dysfunction present within CFS/ME patients, however it's not known if it's a primary cause or symptom.

I still take D-Ribose as it does give me a little relief, but I don't take all the other vitamins she recommends. And I certainly don't eat the caveman diet. (We have certainly evolved since then, and I am recovering from an eating disorder, and use a protocol that is scientifically based)

One final thing I will add though, is how I feel Dr. Myhill and others are mentioning so many deficiencies are present in patients with CFS/M.E. and how we should be eating, drinking and taking X,Y or Z. it just sounds to good to be true.

 

[Wolfiness]

I suggested that this article depicts Kane as a quack, and I suggest it is negligent of Myhill to turn a blind eye to such concerns. It is an argument, not an insult.

https://www.lymeneteurope.org/forum/viewtopic.php?t=3824

PHILADELPHIA (CBS 3) ― There are major developments in the wake of CBS 3 I-Team Investigation of a local woman who calls herself a doctor.

We recently learned that Dr. Patricia Kane, who is not a medical doctor but treated patients at the Haverford Wellness Center, no longer works at the facility in Havertown.

Earlier this year, the I-Team started investigating Kane after uncovering stories from patients like Jeff Repetto, a California man, who spent $50,000 on Kane's treatments.

Repetto says Kane, who claims to hold a PhD, told him that he didn't have ALS which is also known as Lou Gehrig's disease.

ALS is a terminal illness which ravages the muscles. He says Kane told him he simply had a build up of toxins. His disease continues to progress and today he can no longer speak.

Janine Schiller, a Bucks County woman, who was diagnosed with ALS by doctors, told us a similar story.

In April, Janine, who struggled to speak to us because of her progressing disease, described how Kane took thousands of dollars from her for treatments. She said Kane told her that she wasn't dying.

On August 29th, Janine, a wife and mother of three, died from complications of ALS.

"I think that's one of things that is so stark now, is that Janine was so alive and so vivacious and this house is so empty," said her husband Tim. "You know there's a big hole here."

Janine didn't live long enough to hear the news that her husband says would have put a smile on her face. The news that Kane is no longer working at the Haverford Wellness Center.

After repeated requests for an interview that were denied by Kane, we recently met Dr. Domenick Braccia on the way out of the Haverford Wellness Center where Kane saw patients.

Dr. Braccia is the medical director at the Haverford Wellness Center who has also denied our repeated requests for an interview.

When we caught up with Dr. Braccia as he left the center, we asked him for his reaction to Kane's statements telling patients with the terminal disease that they were not dying.

"That is unfounded, that doesn't happen," said Braccia as he walked to his car.

As the center's medical director, Dr. Braccia has known for months about the I-Team investigation and the subsequent inquiry by the Pennsylvania Medical Board. Even so, he repeatedly refused our requests for an interview.

And he refused again to respond on the day we showed up to press for answers.

This week, the CBS 3 I-Team learned that Patricia Kane's biography and picture were pulled from the Haverford Wellness Center's website.

She no longer has a job there.

"Janine would've been so pleased, she didn't want anyone else taken advantage of like we had been," said her husband days after he laid his wife to rest.

Since our investigation began, Kane has refused to provide us with her credentials and did not connect us with the clients she says have benefitted from her treatments for ALS.

It is not clear whether Kane was fired or resigned.

A lawyer for the Haverford Wellness Center would only tell us that Kane is no longer associated with the center and had no further comment.

 

[Brixtonian]

I'm struggling to understand the scorn which has greeted Myhill's "ribose with coffee" suggestion. Perhaps people have overlooked the context, which is her version of the stone age diet? This is a given if you are taking Myhill's advice. And the only sugar permitted on this diet is d-ribose. So of course d-ribose may give you a lift, much like the lift you might get from other sugars if you're not on the caveman diet.

If people are objecting to the coffee, well...I don't buy the "medical" objections to coffee, and clearly Myhill doesn't either. Having given up bread, dairy, fruit etc to go on the caveman diet, I'm delighted that nobody's given me a good reason to stop drinking coffee, which I love!

 

[Demepivo]

I attended one of Dr Myhill's talks in Oxford last year.

I came away with the impression that she is a very good spokesperson for her ideas. She talks fast and enthusiastically using impressive sounding terminology.Bizarrely she seems proud that she has been reported to the General Medical Council 39 times

The problem is that there is little scientific substance to her claims. The fact that mitochondria seem implicated the disease through the work of Robert Naviaux et al seems entirely to be coincidental given the way she uses terms.

It is my opinion that she is preying on vulnerable patients desperate to talk to anybody who will listen.

The same could be said for people who have attended the UK CBT/GET clinics or done the Lightning Process.

 

[Brixtonian]

I suggested that this article depicts Kane as a quack, and I suggest it is negligent of Myhill to turn a blind eye to such concerns.

I would be cautious about inferring too much from that article. It cites 2 unhappy patients who say they have ALS, a rare disease for which there is no definitive test and has symptoms which overlap with many other conditions. One of the patients is trying to build a legal case. The story's by a general news writer, not a health/medicine specialist. There is no follow up to it - i.e. the writer could not find a reason to pursue it. No other papers covered it, i.e. nobody else thought it was a big story. Neither Kane nor her employer have ever given their point of view. It says that Kane 'claims' to have a Ph.D. It starts with 'a local woman who calls herself a doctor'. That's a blatant attempt to smear her, and very irresponsible journalism - it's the journalist's job to check the Ph.D and not just spin some innuendo out of it. It's also a cheap, underhand attempt to whip up fury from less educated readers who don't know what a Ph.D is and think that everyone with the title 'Dr' must be a medical doctor. The story was published 9 years ago. Since then Kane has not been shunned by the medical profession. Her writing has been published and there are about 8 medical doctors on the board of her foundation http://www.neurolipid.org/who-we-are/medical-advisory-board/. The only criticisms I would make of her are that she never published a rebuttal of the story and she doesn't say what her doctorate is in. (Maybe it's in something like fruit flies and it would harm her credibility with less educated patients. Who knows.)

I used to write health features for a newspaper. What I discovered is that colleagues with clinical qualifications tend to write dry, accurate, technically detailed articles without much in the way of controversy or sensation. They don't see any merit in scaring the readers - it's irresponsiible. But the editors want controversy - that's the lifeblood of a newspaper. So they also hire non-clinical journos to write livelier pieces about health. And all those articles are misleading in some way. Often the facts are wrong. Or if the facts are correct they're given undue emphasis and the other side of the argument isn't explained. Getting the facts right is nigh-on impossible for a non-clinical journo, because you have to spend so much time checking and rechecking with doctors that you run out of time and money. You get paid by the word and it's almost unknown to be paid extra for research time, unless you're a big shot investigate journalist. So if I see a health story at a local American TV station I'll be thinking "the chance of this being accurate is 50 to 1. Let's see what the reaction was." In this case nobody reacted, except for people in internet forums. Who are an even less reliable source than journalists.

 

[NelliePledge]

I attended one of Dr Myhill's talks in Oxford last year.

I came away with the impression that she is a very good spokesperson for her ideas. She talks fast and enthusiastically using impressive sounding terminology.Bizarrely she seems proud that she has been reported to the General Medical Council 39 times

The problem is that there is little scientific substance to her claims. The fact that mitochondria seem implicated the disease through the work of Robert Naviaux et al seems entirely to be coincidental given the way she uses terms.

It is my opinion that she is preying on vulnerable patients desperate to talk to anybody who will listen.

The same could be said for people who have attended the UK CBT/GET clinics or done the Lightning Process.

I'm not a patient of Dr Myhill I have looked at the info on her website some of it isn't for me.
I think people seem to take extreme views as shown on this thread that she is either a hero or a quack. When the reality is probably neither. I'm not a scientist so I can't analyse the papers she was involved in with Dr Norman Booth. In the context of PACE it seemed good to me that there were people in the UK at that time publishing about mitochondria and ME/CFS. Is there really nothing of value in those papers.

I just saw a tweet of Dr Davis talking with Dr Booth at iiME today by the way

 

[Brixtonian]

The problem is that there is little scientific substance to her claims.

Do you have the right scientific/clinical background to form this judgement?

As we all know, it's extremely hard to find a qualified doctor who has studied nutrition to an advanced level. I would have thought that only somebody with that sort of training is equipped to assess Myhill's work. I would be very, very sceptical about taking the word of some random person on the internet.

 

[Basilico]

I'm struggling to understand the scorn which has greeted Myhill's "ribose with coffee" suggestion.

I tried the coffee and D-ribose thing and it didn't work for me. But, I am immune to caffeine (I don't get an energy/alertness from caffeine, and my heart rate and BP do not change in response to caffeine, even after multiple servings) and I also don't get a noticeable boost of energy from sugar. I have never in my life experience a 'sugar high' even after eating a really excessive amount of sugar.

I would dismiss my lack of positive response to the ribose/coffee suggestion as me being an exception, except that I've read of plenty of others with CFS who also don't respond well to it. I don't have scorn for the idea, I just think it's one of those suggestions that might sound like it should work but then doesn't produce results in the real world. Ribose clearly helps some people, so sure, it's worth trying. I just don't see it as being a suggestion that has a real impact on the majority of CFSers, like most of her supplement suggestions. I have this same criticism of most CFS 'specialists' and I lump her into that category.

Since millions of people around the world who are not sick frequently use coffee and sugar as a 'pick me up' it kind of feels like a cheap suggestion. It's the kind of thing that would 'pick up' normal people with the result frequently being caffeine/sugar addiction and a rebound effect. Caffeine and sugar are not considered an ideal thing for healthy people to rely on (even though they do), so why is it a responsible suggestion for sick people? I can't really get past this.

*Plus, with her focus on a stone-age diet, this seems to be a major contradiction - grok was not growing, roasting, grinding and making coffee. As far as I can tell, coffee consumption is about 1,000 years old while the stone age diet is based on what was available 10,000 years ago.

 

[Brixtonian]

What on earth is the point of considering d-ribose on its own? It's just one small component of a long treatment which may take many months to have an effect. It may make you feel worse before it gets better. And it won't work for some patients. And other sugars are irrelevant. So is your observation about coffee and the stone age. If you don't read up on the whole treatment it would be better if you just ignore d-ribose and forget all about Dr Myhill!

 

[Valentijn]

Do you have the right scientific/clinical background to form this judgement?

It's a logical fallacy to suggest that credentials are needed to present a valid argument. The scientific basis can be debated by anyone.

 

[wdb]

Do you have the right scientific/clinical background to form this judgement?

As we all know, it's extremely hard to find a qualified doctor who has studied nutrition to an advanced level. I would have thought that only somebody with that sort of training is equipped to assess Myhill's work. I would be very, very sceptical about taking the word of some random person on the internet.

Yes and only qualified astrologers can possibly know if horoscopes are nonsense and only qualified ear candlers can judge if that is a load of snake oil and only trained psychiatrists should assess the PACE trial methodology. The rest of us should keep our opinions to ourselves.

 

[kendonoghue]

While none of her treatments worked. Her description of CFS; was my first epiphany that I had CFS and not depression(after failing with depression treatments for a year).

 

[Brixtonian]

Sorry to hear that Ken. Can you tell us more? I'm following a treatment regime similar to Myhill's and I'm very interested to hear about other people's experiences.