@Sirshocking - Please don't use the funny font and/or italics. It's impossible to read.
DR MYHILL PUBLISHES NEW BOOK
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Jonathan Edwards
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That sounds very reasonable. Chicken pox in adults can be a devastating disease. I would recognise that as a cause of long term fatigue. But what has it got to do with Dr Myhill or mitochondria?
But do we need Dr Myhill to tell us that? I have not eaten anything out of a tin or a packet since I was a student 40 years ago. My wife told me it tasted horrible and I realised she was right. We don't use sugar. Food can have a huge effect on wellbeing. But what has that got to do with mitochondria? The food industry and the NHS provide what people want to pay for. It is surely up to us to go looking for fresh vegetables rather than walnut whips. And if we want an NHS that has time for people with either ME or cancer (as in my case it did not) we have to want to pay enough tax I suspect!
But is she really? I cannot see what eating well has to do with mitochondria or the immune system (which is not mitochondria either). I suspect it has more to do with stopping the hypothalamus taking charge of our lives in a way it should not and making us feel dreadful.
But everybody has EBV 'almost undetectable'. Usain Bolt and Jessica Ennis almost certainly are crawling with hidden EBV virus in their B cells. The entire healthy human race has lived with EBV for millenia as far as we know. And there is already one really strong EBV anti-viral if you really want it. Rituximab is the only drug known to eradicate EBV DNA completely and is used for that purpose.
Having brilliant ideas is no good unless you can back them up in the open scientific arena. Dr Myhill's test is no use until it can be reproduced in labs all over the world. Only then could it provide any proof of a physical nature to ME that would be of service because it convinced people. The onus is on her to convince other scientists that it is worth repeating. That is the basic business of research.
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Just wanted to say a Thank You to all those who signed the recent ''Thank You card'' for Dr Myhill.
I wanted to post it here but it was too big!!
We managed to muster 25 pages in just 2 short days.
Finally, here is a link telling you a little about Dr Myhill's next book, due out later in the year:
http://www.hammersmithbooks.co.uk/sustainablemedicine.html
Many thanks for your amazing and continued support
IS
I wanted to post it here but it was too big!!
We managed to muster 25 pages in just 2 short days.
Finally, here is a link telling you a little about Dr Myhill's next book, due out later in the year:
http://www.hammersmithbooks.co.uk/sustainablemedicine.html
Many thanks for your amazing and continued support
IS
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Evidence versus experience based medicine for patients.
For any patient who wants to be involved with her own life and death decisions , the EBM versus XBM problem comes down to a few simple questions: is one more valid than the other? Always?
http://www.kevinmd.com/blog/2011/06/evidence-experience-based-medicine-patients.html
For any patient who wants to be involved with her own life and death decisions , the EBM versus XBM problem comes down to a few simple questions: is one more valid than the other? Always?
http://www.kevinmd.com/blog/2011/06/evidence-experience-based-medicine-patients.html
Jonathan Edwards
"Gibberish"
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This blog article is a bit weird to my mind - and all the people leaving comments seem to agree. It does not actually compare EBM and XBM, just an unfriendly and a friendly way of presenting EBM. The author seems to have forgotten what they were writing about half way through. Did you get the point?
For my money you want IBM - intelligence based medicine - you look at the evidence and make an intelligent assessment as to how much it is relevant to a particular person in a particular situation and fill in some probabilities using common sense (like you don't wait for someone to have three swollen joints before you give them a treatment that is EBM for three joints and you know they will have three fairly soon if you don't - you treat one badly swollen joint straight away). I you explain everything as you go along.
indeed !!
ut everybody has EBV 'almost undetectable'." Usain Bolt and Jessica Ennis almost certainly are crawling with hidden EBV virus in their B cells. The entire healthy human race has lived with EBV for millenia as far as we know. And there is already one really strong EBV anti-viral if you really want it. Rituximab is the only drug known to eradicate EBV DNA completely and is used for that purpose."
May i ask a question-healthy people do have viruses inside them but if a virus is detected in a person with ME symptoms, which as we know is a life denying disease, then isn't that finding potentially of greater significance? In the sense that eradicating any such virus may represent less of a burden to a diseased/malfunctioning body and greater potential recovery?
May i ask a question-healthy people do have viruses inside them but if a virus is detected in a person with ME symptoms, which as we know is a life denying disease, then isn't that finding potentially of greater significance? In the sense that eradicating any such virus may represent less of a burden to a diseased/malfunctioning body and greater potential recovery?
Jonathan Edwards
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I am not sure that we can say that. There is no evidence that having EBV is on the whole a bad thing. It might actually be a good thing for the immune system. Our mitochondria are after all just bacteria that got stuck inside some other cells millions of years ago. EBV encourages B cells to proliferate and it may just be a source of noise in the system but I wouldn't be sire of that.
There could be an argument that disobedient B cells are worth clearing out if some ME is perpetuated by unwanted antibodies. EBV might encourage disobedience a bit. But because the EBV DNA is in the B cells the only way to get rid of the EBV is to get rid of the B cells and then you've got rid of the disobedient cells anyway so the EBV does not really matter. The proviso to that is of course that clearing out EBV might help ensure when B cells come back they are less disobedient.
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Myhill and mitochondria has a big part to play in this, Have you not read Dr Myhill's book? Have you spoke to Dr Myhill? Perhaps if you did then you may realise that Rituximab is not a magic bullet. It may have a part to play, it may erradicate the offending virus, but it still leaves the patient weak and unprotected. ME and other illnesses develop in patients with weakened immune systems from lack of proper nutrition which has a knock on effect with failing to cope with stress and detox the body. It would be wonderful if you could work in harmony or at least agree with her ideas to give patients the full recovery package?
I contracted chicken pox followed by glandular fever and pneumonia within 2 or 3 weeks of each other, I know people that have had chicken pox that havn't gone on to develop ME. Why is that? We know that it is possibly a virus caused the illnesses, but what caused my failure to recover from it unlike others. I suspect, as does Dr Myhill that problems with energy delivery in mitochondria and a gut that does not work correctly, both from lack of healthy nutrition from a low fat high sugar western diet that has been recommended for several decades... I know the NHS doesn't advise on high sugar but sugar is in almost everything processed( profits for the food industry from sugar addiction). It needs people like Dr Myhill to advise us that that is what is making us ill. You are an intelligent man and saw that healthy food was good for you, not everyone is clever and not everyone can afford healthy food so people with little money or sugar addictions go for processed food and walnut whips which I think you'll agree is a ticking timebomb?
Where does mitochondria get its energy from? Dr Myhill is not the only one to pick up on the fact that much of the immune system centres from the gut where we have supposedly protective bacteria and yeasts to help dispel any alien threats that may come by our way. If the gut is not performing as it should by not eating a healthy wholefood antimicrobial diet and allowing overgrowths of bad bacteria, parasites and yeasts, then these aliens will utilise, sugars, yeasts, vitamins and mineral to proliferate and cause havoc with the body thus stealing vital energy needed by our mitochondria. How can the hypothalmus take charge when its troops on the frontline are failing? Where are the cavalry? The hypothalamus can see a problem in the gut therefore sends out a stress response by giving us the symptoms of illness therefore telling us to send in help.
Rituximab may be the only drug at this time to kill off EBV, but Usain Bolt and Jessica Ennis don't have an autoimmune disease caused by this virus that we know of.. probably because they are on perfect high nutritional sports diets. Their nutritional regime has kept there immune systems protective to fight off any attack by EBV... with the likes of PWME, can we rebuild our immune systems and repair any damage done to fight back the ravages of Epstein Barr. Perhaps the door was shut too late for some.. who knows only time will tell.
The trouble is if any one under the GMC umbrella has a brilliant novel idea that is not within guidelines then the GMC likes to ignore them to the point of ostracising them even though they have an excellent cure rate. Dr Myhill was not the only one... How can these clever people fund scientific research then? Is it any wonder why she continues to practice with relentless conviction when she knows she is right.
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Just to remind folk that you can read the first 40 pages of Dr Myhill's new book at the link below to give yourself an idea of whether this book is for you or not.
[200 more books sold - thanks!]
Here is the link:
http://www.book2look.de/vbook.aspx?id=kwtry1zukp
Many thanks for your support
IS
[200 more books sold - thanks!]
Here is the link:
http://www.book2look.de/vbook.aspx?id=kwtry1zukp
Many thanks for your support
IS
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In addition, you can have a look at Chapter 8 of Dr Myhill's book, entitled 'Catastrophe Theory and CFS' written by Craig Robinson. The new updated version can be found here in full on this webpage of Dr Myhill's website:
http://www.drmyhill.co.uk/wiki/CFS_-_Catastrophe_theory:_why_we_get_into_and_how_we_get_out_of_CFS
Many thanks for your support
IS
http://www.drmyhill.co.uk/wiki/CFS_-_Catastrophe_theory:_why_we_get_into_and_how_we_get_out_of_CFS
Many thanks for your support
IS
I'm a little confused by the idea that we may have made ourselves sick by eating incorrectly. I don't believe this to be true. I first became ill after many years of eating a very healthy diet. I have also been a patient of Dr Myhills and tried her diet recommendations which did not improve my health in any way at all.
As I said earlier I have a LOT of respect for Dr Myhill, but @Sirshocking your post above is somewhat zealous in its tone and seems to once again blame the patients for becoming ill in the first place. Many people where eating a considerably worse diet than me when I became ill and they didn't.
Environmental medicine certainly has its place in helping people to heal from illness and keep in optimum health, but may not always be curative. Dr Myhill herself acknowledges this in her reports where she often states that in the sickest patients there is no cure and treatment is mainly supportive.
I also know of some of her patients who have had some improvements but then relapsed and one patient who completely recovered, but possibly had post viral syndrome with candida rather than entrenched long standing M.E.
I have read her first book and found it very informative - its certainly a great starting point for many patients with good advice on resting, pacing, supplements and diet.
As I said earlier I have a LOT of respect for Dr Myhill, but @Sirshocking your post above is somewhat zealous in its tone and seems to once again blame the patients for becoming ill in the first place. Many people where eating a considerably worse diet than me when I became ill and they didn't.
Environmental medicine certainly has its place in helping people to heal from illness and keep in optimum health, but may not always be curative. Dr Myhill herself acknowledges this in her reports where she often states that in the sickest patients there is no cure and treatment is mainly supportive.
I also know of some of her patients who have had some improvements but then relapsed and one patient who completely recovered, but possibly had post viral syndrome with candida rather than entrenched long standing M.E.
I have read her first book and found it very informative - its certainly a great starting point for many patients with good advice on resting, pacing, supplements and diet.
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Sorry it hasn't worked entirely for you Justy, I wish you luck in whatever you try. I still am not 100% yet.. it's a complex condition, chronic fatigue is a set of symptoms rather than a standalone disease that come about by various triggers. No two people are exactly the same so it's a long haul to find your own route out.
I don't blame the patient, rather the food industry and government for recommending a healthy diet with low fat and high sugar. Processed foods are cheaper and more convenient hence why the UK and the US has an obesity epidemic with an increase in disease.
No one is saying Dr Myhill's protocol is a cure..just as Rituximab is not guaranteed a cure, there are too many variables going on in different patients some will be lucky to get a life back, some may get part of the way and some unfortunately won't.
MeSci
ME/CFS since 1995; activity level 6?
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Some of the reviewers (see 1st page of thread) talk about recovery in ways that strongly imply that following the guidance in the book can bring about it.
This worries me. I think a lot of people will be prompted to buy the book, expecting to recover, and having their hopes dashed.
I think that Dr Myhill has a lot of good ideas that can improve the health of people with ME substantially, but don't think that people should be given such high hopes. It can lead to making plans that cannot be fulfilled, and possibly a belief that one has recovered that could lead to over-exertion and consequent crash.
I don't know of any reports of recovery from Myhill's protocol. Does anyone?
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The reviewers you mention are professionals in a similar field to Dr Myhill so they know what she is practising is built on very good research and knowledge. These professionals would not be allowed to put false claims nor Dr Myhill post them without proof from patients and tests to back it up.
There is a group on Facebook that supports the followers of her protocol that is a great friendly place for advice and tips about the regime and getting towards a full recovery. There are over 900 members for which I'm one of them. There are patients with allsorts of symptoms, problems and additional diseases/autoimmune disfunctions. So I think it would be bold to say that everyone will fully recover when some have unrepairable damage but can achieve hopefully a certain amount of recovery better than they can achieve on there own. Some may crash, and as in my case, I still crash occasionally but recover much quicker. I think we still need to pace even when we are fit again. Dr Myhill states in the book it's not a cure, it maybe for some who are determined, vigilant and lucky to work to keep up the supplements and tests. Supplemental nutrition I think is vital in synergistic unison to make it work..some are unfortunate with bedbound fatigue on benefits that will struggle with the cost of buying the supplements but hopefully will get there albeit a little longer. Dr Myhill has literally saved my life..even if I don't get a 100% recovery I'm happy with the level I am at currently after 13 months on the protocol. I havnt communicated with anyone on the group that has fully recovered..when they get to that stage they usually disappear and like to put CFS behind them. There are several in the group I do know that have been very happy with there progress and wouldn't look back. Dr Myhill is always learning and comes up with new ideas for patients stuck in recovery.
She is worth every penny you spend on yourself!
MeSci
ME/CFS since 1995; activity level 6?
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It looks as though it is a semantic issue with definitions then. I think that most of us here regard 'recovery' as meaning being free from the illness. To me, what you describe as "a certain amount of recovery" is improvement rather than recovery.
I think that a lot of people reading the reviews will understand 'recovery' in absolute terms, and consequently have excessively-high hopes, and may spend more money than they would if they realised that there was little chance of complete recovery.
I know all-too-well how hard it can be to afford supplements. One does not have to be bedbound to be living in dire poverty with this illness. For many years I could not even afford to have my heating on, and had to do without many supplements.
And they can perhaps be bought more cheaply than going via a private physician.
I'm not knocking Dr Myhill. Her book seems reasonably priced, although Erica Verrillo's is much cheaper, and I have a free digital copy of one of Myhill's books which I sometimes use for reference purposes.
It's the reviews that concern me.
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Perhaps the reviews from Amazon.co.uk are a better place to start?
5 star --27
4 star --6
3 star -- 0
2 star -- 1
1 star --1
Hope this helps regarding whether this book is for you or not.
Many thanks for your support
IS
5 star --27
4 star --6
3 star -- 0
2 star -- 1
1 star --1
Hope this helps regarding whether this book is for you or not.
Many thanks for your support
IS
bertiedog
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To put a little bit more balance onto the discussion, at one time when I was one of her patients her advice might me considerably worse. She wanted me to switch from the 2 grain of dessicated thyroid medication I had been on for many years to thyroxine to "get more normal looking blood test results".
Well it was a disaster, within a week at only 50 mcg I started to get symptoms which for me, are those of toxicity. For whatever reason my body cannot handle all T4 medication. It actually needs some T3 and I know I am not alone in this as there are so many accounts of other patients like this that I have read.
This is also the problem with the NHS then want so called normal blood test results but when you take any medication with some T3 in it the body will change the TSH so that mine always ends up with -0.5 which would really scare many doctors. However if they were to check the Free T4 and Free T3 ranges they would see that there is no way I am taking too much as my levels are always well within the range plus I feel a lot better. I get the impression that she wasn't really that knowledgeable about treating thyroid disease in patients who also have ME/CFS (in my case I now have a positive LTT Elispot from Infectolab plus very low CD57 cells).
I hope that Dr M learned something from my experience but I do remember I was very unwell for about a month because of her advice as it had taken several weeks for me to work out why I was having such horrible symptoms. I do have adrenal insufficiency as well as Hashimotos but Dr M was aware of all this.
She did come across as a lovely, caring doctor and I would rather have a conversation with her any day rather than with many of the doctors I have come across in the NHS. I also have benefited from many of the daily supplements she recommends especially to help with energy but my understanding is that most of these had been recommended by the lovely Rich Van K who used to share his ideas with us her on PR. From my experience Dr M was also fairly open minded another trait which seems to be missing unfortunately from many of our doctors.
Pam
Well it was a disaster, within a week at only 50 mcg I started to get symptoms which for me, are those of toxicity. For whatever reason my body cannot handle all T4 medication. It actually needs some T3 and I know I am not alone in this as there are so many accounts of other patients like this that I have read.
This is also the problem with the NHS then want so called normal blood test results but when you take any medication with some T3 in it the body will change the TSH so that mine always ends up with -0.5 which would really scare many doctors. However if they were to check the Free T4 and Free T3 ranges they would see that there is no way I am taking too much as my levels are always well within the range plus I feel a lot better. I get the impression that she wasn't really that knowledgeable about treating thyroid disease in patients who also have ME/CFS (in my case I now have a positive LTT Elispot from Infectolab plus very low CD57 cells).
I hope that Dr M learned something from my experience but I do remember I was very unwell for about a month because of her advice as it had taken several weeks for me to work out why I was having such horrible symptoms. I do have adrenal insufficiency as well as Hashimotos but Dr M was aware of all this.
She did come across as a lovely, caring doctor and I would rather have a conversation with her any day rather than with many of the doctors I have come across in the NHS. I also have benefited from many of the daily supplements she recommends especially to help with energy but my understanding is that most of these had been recommended by the lovely Rich Van K who used to share his ideas with us her on PR. From my experience Dr M was also fairly open minded another trait which seems to be missing unfortunately from many of our doctors.
Pam
bertiedog
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Sorry I forgot to say that I have been on 2 grains of dessicated thyroid plus 25 mcg thyroxine for 12 years (plus replacement steroids) and a DEXA scan showed that I had the bones of a 30 year old despite being 63 at the time so that would appear to be another scare tactic that doctors use regarding hormone therapy out the window, at least in my case.
Pam
Pam
jimells
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Except that it isn't "built on very good research". That's the point Jonathan Edwards was making.
Having a theory is a good start. When it comes to this disease, there's a million of 'em. But where's the evidence? I dare say everyone here rejects the theory that the illness is caused and/or continued by thinking the wrong thoughts, as proposed by the Wessely school, because there is no evidence. Why should Dr Myhill be given a free pass? Being a caring physician and writing a book is not evidence in support of her theory.
p.s. I'm glad your health has improved, and I hope it continues.