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Useful books relating to ME- for patients, and others

hellytheelephant

Senior Member
Messages
1,137
Location
S W England
Hi:)

I thought it would be good to have a thread of books that you have found helpful about ME and related topics- eg, POTS, chronic illness, dealing with pain etc. This would be a useful place for newbies to start, as well as a good resource for us veterans. Include:

Title
author,
what it is about ( i.e ' an introduction to anyone who has just been diagnosed', or ' a guide to living with chronic illness'..etc),
why you rate it.
who you think would like it (i.e ' those who are in the grieving process', 'those who are caring for a person with ME etc)

Apologies if I am repeating an idea, but I couldn't see it when I searched.

BTW: This is a resource and NOT a thread for promoting a particular treatment, or criticising other people's book choices!




Ok: I will start the ball rolling with a couple:

MANAGING CHRONIC FATIGUE SYNDROME AND FIBROMYALGIA - FEEL BETTER, TAKE CHARGE, REGAIN HOPE. By Bruce Campbell ( a previous ME sufferer)
It is a simple and practical introduction to how to pace, and can be used as an accompaniment to thee online course, or read alone. It is a good reference book for MEer, and carers, in terms of day to day advice. Some might find it too much CBTlike, but I have no time for CBT and I find it useful.

LIVING WELL WITH PAIN &ILLNESS- THE MINDFUL WAY TO FREE YOURSELF FROM SUFFERING. By Vidyamala Burch. This is a very down to earth account of creating coping strategies with pain, with the authors own long and painful journey with illness fully explored, as well as other accounts throughout.
I avoid the section on posture and stretching- but it is a book I come back to inspire me and anyone interested in the possibility of using meditation to help with pain and illness management. She is the creator of 'Breathworks' and I like the way she is not talking about 'cure' or changing anything- just 'Living Well With'

Helly x.:)
 

rodgergrummidge

Senior Member
Messages
124
Hi:)

I thought it would be good to have a thread of books that you have found helpful about ME and related topics- eg, POTS, chronic illness, dealing with pain etc. This would be a useful place for newbies to start, as well as a good resource for us veterans. Include:

Title
author,
what it is about ( i.e ' an introduction to anyone who has just been diagnosed', or ' a guide to living with chronic illness'..etc),
why you rate it.
who you think would like it (i.e ' those who are in the grieving process', 'those who are caring for a person with ME etc)

Apologies if I am repeating an idea, but I couldn't see it when I searched.

BTW: This is a resource and NOT a thread for promoting a particular treatment, or criticising other people's book choices!
Ok: I will start the ball rolling with a couple:

MANAGING CHRONIC FATIGUE SYNDROME AND FIBROMYALGIA - FEEL BETTER, TAKE CHARGE, REGAIN HOPE. By Bruce Campbell ( a previous ME sufferer)
It is a simple and practical introduction to how to pace, and can be used as an accompaniment to thee online course, or read alone. It is a good reference book for MEer, and carers, in terms of day to day advice. Some might find it too much CBTlike, but I have no time for CBT and I find it useful.

LIVING WELL WITH PAIN &ILLNESS- THE MINDFUL WAY TO FREE YOURSELF FROM SUFFERING. By Vidyamala Burch. This is a very down to earth account of creating coping strategies with pain, with the authors own long and painful journey with illness fully explored, as well as other accounts throughout.
I avoid the section on posture and stretching- but it is a book I come back to inspire me and anyone interested in the possibility of using meditation to help with pain and illness management. She is the creator of 'Breathworks' and I like the way she is not talking about 'cure' or changing anything- just 'Living Well With'

Helly x.:)

Wonderful idea @hellytheelephant ! I was keen to buy books to try and help me with my disease. Like you, I had done a bit of a search of PR but couldnt find such a resource. Your outline which i have pasted below is great. I included 2 suggestions that might make it simpler and easier to quickly scroll through a Book Review thread:

1) Include a star rating which will also allow people to quickly and more easily guage which books to examine more closely as they scroll the thread.

2) Perhaps a streamlined approach using bolded formatting of Title, Author, Star Rating and Review to allow people to more easily skim through the thread.

Thus, there would be a consistent Book Review Template making it easier to read the thread. It would look something like:

Title:
Author:
Star Rating:
0-5
Review (Write a review that highlights the potential strengths and/or weaknesses of the book. What aspect of ME/CFS does it focus on? Who you think would like it? etc):

Its a pity @hellytheelephant that your post didnt get picked up by others. In part, it may be because it got lost down the very bottom of the Forum landing page under a section heading, 'Miscellaneous Resources, Projects and Archives' in the 'Information and Resources' subsection that gets very little interest or traffic (726 messages in total).

I am new to PR. Is there some way that your idea can be promoted? Is this something that could be suggested to the PR staff? I’m sure that a compendium of ME/CSF Book Reviews would be incredibly helpful for all on PR in terms of deciding which of the many many books to purchase in trying to understand, treat and cope with their illness.

Ideas? Suggestions?

Rodger

 
Messages
17
Lightening the Shadow: Diagnosing and Living with an Invisible Chronic Illness by Darla Nagel is a powerful yet practical memoir about a 19-year-old rebuilding her life after developing a disease that attacks her cognition and digestion, among other effects. Learn seven lessons to ease the chronically ill lifestyle. This book is intended for patients with ME, healthcare providers, and now COVID-19 long haulers.
Lightening_the_Shadow_cover_for NA.jpeg
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
There is also a large compilation of books on ME-pedia:
https://me-pedia.org/wiki/Category:Books

mepedia said:
Pages in category "Books"

The following 114 pages are in this category, out of 114 total.
1

A

B

C

D

E

F

G

H

I

L

M

N

O

P

R

S

T

U

W

Z

 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
Last edited:

lenora

Senior Member
Messages
4,926
Thanks @Pyrrhus..."So many books and so little time." How true, although I thought I was up to date with reading them. I make a point of not reading everything, you just ended up scrambled. Still, I have shelves of books about the illness(es) and even autoimmune encephalitis.

This is an illness with an incredible no. of variations, so no wonder the "lay" person doesn't understand it. It's hard enough for me to at times. I tuck everything under the heading of "ME/CFS/FM." It actually helps at some point (after many years).

Cute picture of the little girl (above). I didn't know there was a book for children, but it's an exceptionally good idea. My children are now older than a lot of you and even my grandchildren are, but it would have been helpful. Yours, Lenora
 
Messages
75
Location
Montana, USA
From Fatigued to Fantastic!
By Jacob Teitelbaum, M.D. - an internist and the former medical director of the Fibromyalgia and Fatigue Centers

The first part of this book contains the SHIN protocol (sleep, hormones, infection, nutrition). The book discusses CFS and a small section on Fibromyalgia in depth with the specific health problems that can be associated with CFS, and the treatment of those problems.

I bought this book before I knew I had CFIDS, based on my worst symptom, fatigue. So I think this book is great for anybody who suspects they may have ME/CFS, is newly diagnosed, or is a veteran.

I rate this 5 stars. I prefer the 3rd edition of this book which is textbook style, but the 4th edition is better for those struggling with more brain fog since it has summaries of things up front you can read. The index is fantastic for looking up specifics from lipoic acid to progesterone to adrenal glands, etc. It's one of the books used by Holtorf Medical Group, where I was diagnosed and get treated for CFIDS.

I haven't really read much of his blog, but here is his blog index for those who may be interested https://www.vitality101.com/health-a-z

And I've found the articles written by Holtorf Medical Group on CFS to be very informative https://holtorfmed.com/?s=Chronic+Fatigue+Syndrome