Anyone read this book on Chronic Fatigue?

[longtimer]

My husband and i think I'm suffering from Chronic Fatigue - so I just downloaded this book called Chronic Fatigue Syndrome and Myalgic Encephalitis by Dr. Sarah Myhill. I'd like to know if anyone else has read this and what you think about her suggestions for self treatment?

 

[JayCS]

I haven't read it, but am not uninterested since my severe fatigue is the main thing left, even tho I'm doing all I am.
I found what I believe will be a very good summary on fightingfatigue roadmap-for-dealing-with-problems-of-cfs

I have been doing absolutely everything she recommends for over a year, and won't stop, cos it all helps a little bit with other things, and I've been doing a lot more for that and all my conditions. (Everything I can get hold of (L D N) or tolerate (electrotherapy) that is.)

The only thing I don't necessarily agree with is
"Adopt the 80% rule (which means: know what you are capable of in a day and do just 80% of that – 20% is “getting better” energy)". I'll think about it further, but I'm pretty sure I only need "getting better" energy on days after I've overdone it, it doesn't help if I haven't. Maybe it's just very personal, like the energy bursts I used to have before MCAS which I feel may be returning after 7 months of Chinese acupuncture.

Interesting the end where under Stage 4 she says if nothing else helps, it may be food and other allergies. This seems a pointer to MCAS, but no solution, since I am doing absolutely everything there I can too. Also before that I was doing everything for fibro and fatigue she recommends and still 35% was my maximum amount of physical activity. And if I hadn't been doing a lot more than that, I wouldn't have had much quality of life either.

But, as I am doing all this, I would of course also recommend trying everything she says (or I do... ).

Actually the first protocol I came across saw mitochondria/ATP as the root cause of many things like CFS & FM and I followed that supp protocol 3x for 3 months. And I keep thinking there might be something there, just I haven't found it yet. When I came across ATP powder 2 weeks ago and have already got it. I decided I'd give it a fling, altho apparently most people don't think it can help alone. But they think that about GABA too, so maybe it's mine...??

 

[longtimer]

Hi JacCS
I'm only a bit into the book - she has extreme positions about the medical system in the UK, of which I know nothing. So far what I've gathered is she is recommending a keto type diet. I am already off gluten and lactose, but am willing to try going off grains and sugars too if it will help. I tried the no carb diet years ago and it was awfu,l so there has to be a pay-off in health for me to stick with it (I haven't committed to it yet).

My husband did some research last week and concurs with the book that CFS has a mitochondrial element and the recent scientific literature seems to point to NAC (N-Acetyl-L-Cysteine) and D-Ribose as possible supplements for mitochondrial function. The NAC is not recommended, however, for anyone with cancer.... as it can promote cell growth.

I'll continue reading this book - just wanted to know if others have read it. On Amazon it is highly rated - and this is an updated and revised edition apparently.

Also - the author says that exercise regimens ordered by doctors only make the condition worse by stressing a fatigued system. I am interested to see what she offers - perhaps her 80 20 regimen that you mention is where she's going... I'll keep reading... and commenting on it.

 

[JayCS]

keto type diet

Yep, that's also what it said in the summary.

no carb diet years ago and it was awfu,l

Every time I've checked the reasoning including studies of the main proponents, it always comes down to no carb actually meaning keep clear of processed foods, and that they have absolutely no evidence for "un"processed wholemeal foods being bad. So I'd encourage you not to take that too literally.

NAC (N-Acetyl-L-Cysteine) and D-Ribose

I did NAC for about a year and D-Ribose on and off. I stopped NAC altho it was helping a tiny bit for fibro because it seemed to increase allodynia, making it harder for me to cold shower, one of my mainstays for sleep. I'm planning to try it again, but lots of other trials at the moment, leaving off quercetin but adding olive oil extract (Berg for fibro), ATP (for mitochondria), B3 flush free, alpha GPC (for HGH) and fisetin (more MCAS).
Still got a big tub of D-Ribose, but it die hardly anything for me except the first times I tried it an immediate short "sugary" booster. Often tho causing gut problems, especially at the dose recommended. And it is a sugar, so also a simple carb, and so that doesn't make sense to me and I don't want to take a risk for my lipids until someone can put it into a different perspective, which I doubt, as it's not at all well researched.

exercise regimens ordered by doctors only make the condition worse by stressing a fatigued system

Summarized that bluntly I'd agree 100% . Not just the exercise, everything from docs that don't think functionally is a danger - harmed me. But normal exercise regimes and normal PT along with the myth of needing to push thru the pain and fatigue are poison for us. However to "unblunt" it, I've realized that I can do every single exercise there is as long as I pace by keeping to the sweet spots, which in the case of conventional PT may be 20-10% of the time, many breaks, and 40-50% of the intensity of most exercises. But your word "regimen" is spot on: The problem is the "regimental" = militant way of forcing a certain amount upon us without letting us listen to our bodies.

perhaps her 80 20 regimen that you mention is where she's going... I'll keep reading... and commenting on it.

That'd be sort of "anti-regimental", and in that sense a soft gentle battle against the battling attitude. In that sense I love it. Keeping a bit below our limits can often be valuable, save us from ourselves.
Maybe not her main message, but an important part. Even if she did stick to it like glue it'd still be far more helpful than the "pushing-thru" attitude.

Yeah, keep us updated please!

I just saw one of my open tabs on verywellhealth is about low-energy-and-atp-in-fibromyalgia-and-me-cfs-4125121, with supp suggestions:
Post-exertional malaise has always interested me if that's different in fibro than CFS and what mine is.
For supps they mention CoQ10 first, then Carnitine, Creatine, D-Ribose, Magnesium and Niacinamide (vitamin B3). None does anything for my fatigue at all, except ...
I'm now all set to try B3 flush free, cos B3 otherwise was too taxing and no help... and
creatine I've never tried, 2-5g/d, praps cos the side effects don't look good.
(But of the two forms I've seen the HCl form has no medical evidence but probably less side effects, whilst the monohydrate form has quite a lot of evidence for athletes, that's where I've heard the term before.)

 

[longtimer]

thanks for your input - I'm going to read up on the supplements you mention, and I agree that Keto diets are too restrictive - whole grains like oats, quinoa and buckwheat are so healthy with lots of protein and b vitamins and fibre - who doesn't need that?