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DR MYHILL PUBLISHES NEW BOOK

Messages
7
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.

There is no guarantee of a full recovery. As you may well know that CFS covers many symptoms and triggers that cannot be helped or is currently misunderstood. All I know is that if you don't try to treat your own set of symptoms by whatever means, even if you have to go privately which will cost then you will never know. But for me as with others the treatments are at least giving me a reasonable amount of renewed energy, focus and stamina to the point it maybe keeping me alive until researchers find out the real reason why this is happening.

Much of Dr Myhill's protocol is proactive and is in my opinion is the best self help for PWME for many years.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
There is no guarantee of a full recovery. As you may well know that CFS covers many symptoms and triggers that cannot be helped or is currently misunderstood. All I know is that if you don't try to treat your own set of symptoms by whatever means, even if you have to go privately which will cost then you will never know. But for me as with others the treatments are at least giving me a reasonable amount of renewed energy, focus and stamina to the point it maybe keeping me alive until researchers find out the real reason why this is happening.

Much of Dr Myhill's protocol is proactive and is in my opinion is the best self help for PWME for many years.

I agree that it is a good idea to treat our own symptoms (and perhaps even the underlying illness - one can hope!) using reputable information to guide us. I'm doing it myself, and occasionally use Verrillo's e-book for reference, although most of my info has come from scientific papers and various authoritative websites. It is trial and error, and there have been setbacks due to the errors, but I too have achieved substantial improvement, and my ultimate (possibly-unachievable) goal is recovery.
 
Messages
1,082
Location
UK
I'm totally torn on whether to splash out on the mitochondria test. I've been wanting to do it for years but could never afford to. Now I finally can but spoke to a well respected top researcher about it recently and she said she couldn't recommend having the tests done. She mentioned that she would suspect that everyone I know who's done the tests all have a positive result which would then lead on to a treatment plan costing more money...

I was really surprised by the reaction. Someone also asked a similar question about the tests at a recent conference and was told that if Dr. Myhill would be willing to share her data and research to replicate they would be able to figure out if it was useful or not but until then they can't comment on it.

So in the space of a month, I've heard not exactly positive opinions about her by respected doctors.

I was right on the cusp of ordering mine and now I'm a little hesitant and trying to figure out whether to keep the cash in my pocket for now.
 
Messages
73
Im not sure about the mitochondrial tests either. They are expensive but if the results are a certain way and you need to take the supplements - I am unsure if there is any good evidence the expensiv4e regime actually works. I have heard some people say you are better off trying the basic regimen anyways without the test...Ive heard plenty of people say they couldn't tell if it made a difference or not...I would say if you suffer from that total energy failure symptom following a limited exercise/walking/exertion - that means you have to rest for a day or so - then to me it suggests you might have a acute mitochondiral malfunction which means supplementing perhaps could help...but I suspect the true cause of the mito malfunction needs to be addressed...adding more fuel in the form of supplements - will it help? Im not sure as yet...