Australian Book on CFS recovery

[susan]

This young guy a Physicist came to our CFS group to talk about his book. He became ill with CFS and after the usual run around, decided to discover a unifying theory of CFS based on a review of the studies. He may have succeeded. His explanation is in very clear English and not gobble-de-gook, very appealing..
He has also written another ebook that he is giving away FREE from 8th of Dec till 12th on HOPE essential to recovery on Amazon. Note this is not the book I am referring to, just a short 58 page book on 34 ways to engender hope.

The first section of CFS Unravelled describes the three self perpetuating cycles of systemic dysfunction that create the illness. Mitochondrian, bowel, adrenal, methylation, glucose, liver dysfunctions, add with various kinds of stress and autonomic nervous system dysfunctions and mix. Voila! Not a lot I haven't heard before but this time told in a integrated story start to finish and with more clarity and detail.

The two most interesting parts personally were that not only is the amygdala/sympathetic nervous system switched on to hypersensitivity but so is the parasympathetic nervous system so that we have only two speeds: full on or full off. No gray in between. The other nugget is that glucose is deeply implicated in our fatigue cycle. This is born up by many other people I have been reading the past who see simple sugars as a culprit in many disease cycles. This means when I am eating my 6 foods and I eat white rice instead of brown because it is easier to digest I am probably making my fatigue worse. He has come to many of the same conclusions I have about diet. Especially for the ill. Avoid grains especially wheat, no dairy, no alcohol, no sugar or vegetables with major starch, no coffee or caffeine, chocolate. You've heard it before. But there is much more than this.

Annoyingly it costs $17 as a pdf that is print protected so you must read it on screen. It is long. 260 pages. The line spacing is generous, he uses lots of color and formatting so it is physically easy to read. It is well written. It is indexed. He has a protocol for healing. He suggests hitting several nails on the head at once. It is what we are already doing haphazardly but with solid reasons behind it all. Far more motivating. A solid document if you are interested. His website has some free videos cfsunravelled.com

 

[ukxmrv]

This guy posted to another group trying to sell his book. I wasted time logging onto his website and looking at some of the videos.

He appears to have had some emotional stress related disorder and recovered from that. It's had to tell as the videos I looked at were waffle, waflle, waffle with little of note.

His theories can't explain why ME would occur in epidemics and it doesn't explain an acute viral onset in a well person such as myself. It also doesn'e explain why I am still sick with viral symptoms. Had a great diet and quiet life when I developed ME overnight.

It appears to be an explanation for his one experience with an ideopathic chronic fatigue. Sounds like he had burnout and a crap diet. Maybe some emotional stuff. It's hard to tell.

Can't personally see any benefit from the diet you describe above for me. Lots of people have a bad diet and stress in their lives but don't get fatigue, let alone ME.

 

[beaverfury]

Thanks, susan. I will check this out as soon as my internet reception improves

 

[susan]

This young guy a Physicist came to our CFS group to talk about his book. He became ill with CFS and after the usual run around, decided to discover a unifying theory of CFS based on a review of the studies. He may have succeeded. His explanation is in very clear English and not gobble-de-gook, very appealing..
He has also written another ebook that he is giving away FREE from 8th of Dec till 12th on HOPE essential to recovery on Amazon. Note this is not the book I am referring to, just a short 58 page book on 34 ways to engender hope.

The first section of CFS Unravelled describes the three self perpetuating cycles of systemic dysfunction that create the illness. Mitochondrian, bowel, adrenal, methylation, glucose, liver dysfunctions, add with various kinds of stress and autonomic nervous system dysfunctions and mix. Voila! Not a lot I haven't heard before but this time told in a integrated story start to finish and with more clarity and detail.

The two most interesting parts personally were that not only is the amygdala/sympathetic nervous system switched on to hypersensitivity but so is the parasympathetic nervous system so that we have only two speeds: full on or full off. No gray in between. The other nugget is that glucose is deeply implicated in our fatigue cycle. This is born up by many other people I have been reading the past who see simple sugars as a culprit in many disease cycles. This means when I am eating my 6 foods and I eat white rice instead of brown because it is easier to digest I am probably making my fatigue worse. He has come to many of the same conclusions I have about diet. Especially for the ill. Avoid grains especially wheat, no dairy, no alcohol, no sugar or vegetables with major starch, no coffee or caffeine, chocolate. You've heard it before. But there is much more than this.

Annoyingly it costs $17 as a pdf that is print protected so you must read it on screen. It is long. 260 pages. The line spacing is generous, he uses lots of color and formatting so it is physically easy to read. It is well written. It is indexed. He has a protocol for healing. He suggests hitting several nails on the head at once. It is what we are already doing haphazardly but with solid reasons behind it all. Far more motivating. A solid document if you are interested. His website has some free videos cfsunravelled.com

 

[susan]

Some of you might have missed these videos as to what is going on in CFS. I missed these particular videos. They are quite lengthy videos that are very in depth. filled with so much info rather than waffle. http://cfsunravelled.com/videoxplanation/?setuser=1199

My understanding of CFS suggests that “emotional crisis "does not" have to be involved. People get triggered by a many different causes, including severe viral infections.

There are several reasons for epidemics. They may be caused by environmental poisoning in an area, an outbreak of a severe infection (viral, bacterial or other). But whilst some people will recover from what might be described as post-viral fatigue, many others with develop post viral fatigue syndrome.

 

[ukxmrv]

Maybe you would be as good as to summerise what you think is useful in the videos Susan.

I wasted some valuable time and energy looking at his videos and couldn't see anything helpful for me.

Dr Ramsay investigated outbreaks of ME and wrote how they were different from post viral fatigue. Seems like the author of these works needs to learn about the ME outbreaks if his intention is to explain them, however if he wants to talk about is own problem with fatigue then it's not needed.

It would also be useful to determine what the author means by chronic fatigue syndrome. To me it sounded like an ideopathic fatigue state or burnout that would resolve in time or with lifestyle changes (which his did he says).

 

[susan]

Maybe you would be as good as to summerise what you think is useful in the videos Susan.

I wasted some valuable time and energy looking at his videos and couldn't see anything helpful for me.

Dr Ramsay investigated outbreaks of ME and wrote how they were different from post viral fatigue. Seems like the author of these works needs to learn about the ME outbreaks if his intention is to explain them, however if he wants to talk about is own problem with fatigue then it's not needed.

It would also be useful to determine what the author means by chronic fatigue syndrome. To me it sounded like an ideopathic fatigue state or burnout that would resolve in time or with lifestyle changes (which his did he says).

His videos hurt my brain as they contained too much info. What I took away from them that the ANS in all of the fatigues has been overwhelmed and stuck in top gear, from various traumas ie viruses, bacterias. The ANS becomes further hyped up sugars . The guy is a Physicist so he gets into stuff and I am brain too dead today to go further. I can assure you he has talked with the worlds leading researchers. Not easy to have an ordinary talk with him as i get too confused as he gets over my head.

 

[Allyson]

sugar... the problem when people say that is a problem is that white bread white and BROWN rice! and potatoes and a few other things are very high GI and thus cause a HIGHER spike in blood sugar levels than eating actual sugar itself does.
the only rice that is low GI is basmati

So I have yet to be conviced that suger free achives much unless you adopt a low GI diet as well

For me a lactose-free and low- FODmaps diet for IBS has the most success in decreasing gut symptoms

 

[ukxmrv]

I'm not sure why a physicist would have any greater understanding of this disease process than any other educated person. Rich Van KB was also a physicist and he had a systems approach to things and an interest in the methylisation angle. He took an idea and developed it trying to base it on science.

Couldn't see any sign that the chap selling these books had a long proven career in producing results or research or anything that would give him an advantage. Couldn't see him offer a structured, evidence based approach.

From what I saw the person selling the books was taking stuff from the unproven, theoretical "stress" areas and then extrapolating in a way that ignored the evidence of what is really happening with patients i.e. looking at this like Gupta for example not like Bell. He was also throwing in some current theories but it a way that negated them i.e. all this may be happening but I still got well in a way other patients haven't.

Not sure why you mentioned that he had spoken to the worlds leading researchers as many patients are doing this. Doesn't mean he is right or that he understood their approach and why he didn't need their help to get well.

For example Cheney, Peterson, Lerner, Montoya, Enlander etc are all treating CFS and ME with drugs, supplements etc. We have the study in Norway using an approach with drugs. Yet the chap who wrote the book wasn't using any thing leading edge or any of these approaches. He claims to have healed himself and be well.

So what is the difference between him and all the people here and all of the patients being treated by these doctors?

I'd like to see more scientists work with why ME occurs in outbreaks as a starting point if they want to offer an inclusive explanation. If they want to talk about themselves or endemic cases then that's fine with me but that doesn't cover the whole picture and once again that's fine but limited.

 

[beaverfury]

It appears to be an explanation for his one experience with an ideopathic chronic fatigue. Sounds like he had burnout and a crap diet. Maybe some emotional stuff. It's hard to tell.
.

http://cfsunravelled.com/dan-neuffers-cfs-recovery-story/

"When a colleague’s husband had come down with the chickenpox, I quickly organised a vaccination as time off sick was the last thing I needed. However, within a week of receiving the vaccination, my first CFS symptoms appeared, which were extreme fatigue affecting my ability to walk. (see more in my video here).
Dan’s Experience of Having Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis /Fibromyalgia

My illness quickly morphed into a large range of classical CFS symptoms. I suffered with a staggering range of symptoms over the years, but my main ones included ongoing extreme fatigue not alleviated by rest, bouts of fever and other flu-like symptoms, gastrointestinal symptoms as well as night sweats, cardiac symptoms, orthostatic hypotension, allodynia, excessive urination at night, salt cravings, and neurological symptoms such as fibro fog. My symptoms changed over the years and my fibromyalgia pain symptoms became more prominent during the second half of my 6 year illness.
Like many others, I soldiered on as best I could until eventually I had to work part-time and later on was unable to work at all for extended periods of time, especially during the later parts of my illness." Dan Nueffer

 

[anne_likes_red]

Thanks for the link Susan!

I haven't read Mr Neuffer's book, but I did just watch his videos.
I find his emphasis on the raphe nuclei and locus ceruleus interesting (and I think they may have relevance in my own recent improvement).

There are some things about his website that don't sit quite well with me, I won't elaborate on them, but I really didn't come away with the impression he had idiopathic chronic fatigue caused by burnout and a crap diet either.
...Funny, I'm doing really well lately and I've been going over the history (long history!) of my illness with a doctor friend this week. Anyway, I was remembering the first GP I visited after I developed my (infectious onset) ME suggested burnout and an inadequate diet were the most likely cause of my "wastebasket illness". He said he would have called it yuppie-flu...except, I was about ten years too young to be a yuppie! He had me wrongly recorded as a vegetarian. He didn't go so far as to call my diet crap but insinuated as much!
(In fact I'd always had a really good, balanced, whole foods diet, and my mother was a nutritionist.)

Thanks again for the link Susan. I probably won't buy the book, but I am interested in his case!

 

[beaverfury]

I splashed out $17 and read the book yesterday. I thought it was excellent.

It has given me a better understanding of the role of cortisol in cfs. He suggests not spiking our cortisol and glucose levels with stimulants such as coffee, tea, nicotine, sugars etc and thus putting more pressure on the autonomic nervous system. ( That might seem obvious, but although my diet is good i still transgress)

The idea of living without stimulants bores me to tears. I actually only just took up nicotine( in the form of nicorettes) to give myself a bit of a lift cognitively because of cfs. It works, i love the stuff. But as he points out, it may be leading to further adrenal exhaustion etc. Great.
Not drinking coffee, for me, means facing myself, illness ridden, loveless, head on!! I NEED COOFFEEE!!

Avoiding or dealing with phsychological stress plays a big part in his strategy to heal. He cites Joseph ledoux as an influence, as had Ashok Gupta previously. Whereas Gupta suggested avoiding negative feedback primarily to the amygdala, Dan Nueffer also implicates the locus coeruleus. It makes a lot of sense.
How you avoid psychological stress is anyones guess. Beaverfury suggests buying a desert island and having semi clad nubile maidens fan your head and peel your grapes.

The book is comprehensive, logical and integrated. Its orbit limits itself around his theory of Autonomic nervous system dysfunction, which is beneficial if you want to follow just one treatment regime and not get confused by a million other conflicting reports.

Nueffers suggestions are practical, possible, sensible. I like his idea of limiting supplements down to a few essentials.

 

[susan]

Dan Neuffer will be giving away his book Cfs Unravelled FREE very soon. Right now on Amazon it is only 99 c Kindle version. You don't need to own a Kindle as Amazon will download it to our PC. Might have to install Kindle for PC....not sure there.

Recently he wrote a great little book on HOPE which was very good. Last week he sent around 2 videos to,watch on how to develop Hope

I think they maybe on his website, http://cfsunravelled.com/books/