Hi there, my name is Graham.
A regular guy who got unusually sick
I came down with Chronic Fatigue Syndrome on 9th March 2008. I know the exact date, because I remember developing a cold or flu-like illness on the last day of the 2008 Womadelaide World Music Festival. I have been ill ever since. My symptoms are basically the same as what I normally get when I have a bad cold: runny nose, cough, sneezing, sore throat; plus fatigue like you wouldn’t believe. The fatigue is worst usually for a day or two after any physical exertion.
Prior to suffering from CFS I had a very active life, going dancing several nights of the week, playing in a band, and going to the gym 3 times a week, including a weekly personal training session. CFS changed all that…
Chronic Fatigue Syndrome (CFS, ME, ME/CFS, CFIDS; I don’t care what you call it) is far and away the greatest challenge I have ever faced. I’ve tried a bunch of treatments and been to many doctors, specialists, and alternative health practitioners. I’ve improved my diet, taken drugs, vitamins, supplements, homeopathic remedies and all sorts of crazy wacked out stuff.
In late 2009 I came across references to the Gupta Amygdala Retraining Programme on the ChronicFatigue treatments forum, and recognised a strong match to my symptoms. Ashok’s description of the cause of CFS as a self-perpetuating stress response centred on the Amygdala in the brain also made logical sense to me… not like some of those nutty alternative health cures I’ve tried or energy healers I’ve visited. He recommended committing to the programme for at least 6 months, which sounded like a hell of a long time to stay focused so I set up this blog to track my progress and help keep me motivated.
I originally intended to keep blogging for 6 months.
That was 10 years ago now.
CFS forced me to confront the feelings that I had managed to avoid for a long time and I began studying emotional intelligence in detail. This includes the impact of early life trauma, emotionally unavailable parental figures, emotionally disconnected family members, mental illness, anxiety, depression, bullying, social anxiety, social isolation, stress, shame, guilt, fear, anger, sadness, the physical effects of emotional suppression/repression, emotional healing, somatic experiencing, music therapy, comedy therapy and a wide range of nervous system and mind/body therapies.
In November 2018 I finally had a polysomnograph and was diagnosed with severe sleep apnea, which changed everything. I really wish I’d had a sleep study years earlier, but my focus then became finding a treatment for sleep apnea in the hope that it would resolve my CFS symptoms, since nothing else had.
Talk soon,
Graham
29 Comments
Alison Herridge · June 14, 2016 at 1:27 AM
Hello, my friends husband has had Chronic Fatigue for many years. He also has a high sex drive, which I find unusual. Is this normal in a person who has Chronic Fatigue?
TIA
Graham · June 14, 2016 at 10:13 AM
Hi Alison,
I don’t really know what’s normal with respect to sex drive; it doesn’t seem to have reduced mine any. I’m curious what treatment your friend’s husband is on and if it’s working?
Cheers,
Graham
Magic · August 24, 2015 at 10:11 PM
Well, the last comment was left in 2010 and tis now 2015. I write with utter despair, feeling totally Alone, and not sure I want to go on. Yet reading these blogs helps.
I’m still awaiting a formal diagnosis, but my physio thinks I have fibromyalgia. The pain is bad, but the fatigue is gutting me. I don’t even have the energy for meal preparation, much less shopping. I feel isolated from my family and the few friends I have (had). I try to eat clean, research my options, stay active where possible, and actively practice gratitude (including sending thankyou cards or notes to others) but the fatigue is destroying All. My. Energy, and it takes energy to take care of one’s self. How do you stop it destroying your soul?
Gaa, sorry about the pitiful message! Thanks for the blog *smiles*
Graham · September 7, 2015 at 12:39 PM
Yeah I hear ya. The fatigue is a challenge alright. Social isolation doesn’t help, but it’s natural to want to withdraw when we’re feeling bad. This is one problem that doesn’t seem to get better the more we focus on it; so my question is: what things make you feel better, even if only a tiny bit?
Natalie · April 15, 2015 at 9:38 AM
Hi Graham,
I know your not really active on your blog currently as you’ve gone off to live instead of focusing on your CFS as a job ;). I always did find your posts enjoyable and funny! A good balance of positivity and healthy skepticism. Anyways I’m in a search again phase for cfs..tired of feeling tired! And wondered how you were getting along? Any big improvements? And tips of practices etc that you have kept up that you’re seeing benefits from. Actually wouldn’t it be awesome if you were not tired at all anymore!
Thanks Natalie
Graham · April 15, 2015 at 1:41 PM
Thanks for encouraging the feedback Natalie. I’m about 70-90% better, depending on when you ask me. I’m busy now becoming a comedian, so you can still follow me on my comedy blog at http://grahamstoney.com/. I’ll post an update to answer your questions in the next few weeks. Cheers, Graham
Lisa · July 28, 2014 at 4:46 AM
Hi Graham, I’m not sure if you’re still actively doing this blog anymore. Are you feeling better now? It looks like you started this a few years ago. I just added you on Skype. I just began the Gupta Programme. I live in the US, so I won’t get the DVD’s for a few weeks, but I have a general idea of what it’s about from the videos. Do you think the Gupta Programme or Mickel Therapy was more useful? I’m wondering about the “boredom” theory with Mickel Therapy. I have been in bed most of the time for months and I don’t think it’s helping my condition, but I have so little energy I can barely do anything at all. I couldn’t even walk for about five months. I can take a few steps now, but not many. But I’m terribly bored and in pain and if I expend any physical energy my whole body freezes up, so I’m not sure what to do! I have made some progress since first getting ill in December. Anyway, I’d love to hear any advice you may have. Lord knows I need it! Take care. I hope you’re doing really well!
immi · September 12, 2013 at 12:29 AM
Hi Graham,
I hope you’re having a good day today! I just wanted to leave you a note, as your writing has touched me. I think I’m also dealing with CFS, or at least some weird fatigue for a few months, and I love to read from people who are not drowning in their self-pity. Keep up the good work and attitute.
Funny you mention P. Levines Work. I got to know the trauma releasing exercises a few weeks back and was amazed. However, I couldn’t bring up the energy to do the introductionary exercises to get me to shiver. I should try again. How is your Gupta-progress going?
Take care and don’t give up writing!
immi
Graham · October 20, 2013 at 4:52 PM
Thanks Immi, I appreciate your encouragement. I have no idea where you got the idea that I’m not drowning in my own self-pity though! That made me laugh. Just don’t talk to me between 3 and 5 every afternoon.
It took me a while practising Somatic Experiencing before I felt a shiver go through my nervous system. Now I feel them regularly. I think the key is to really relax your body first though meditation and breathing exercises. I also did other David Bercelli’s Trauma Releasing Exercises for a while which may have helped. I suspect the underlying mechanism is the same, and the suppressed nervous energy is what overwhelmed my nervous system in the first place when smashed all my unresolved issues in one hit by writing an as-yet-unpublished book about my life.
I still follow many of Gupta’s principles, but I don’t believe in the Stop-Stop-Stop thing enough to get up and actually go through the motions any more. However, I do notice that when I have a distressing thought I almost always feel a nervous shiver if I try somatic experiencing right after it. This way I don’t have to get off the couch! I suspect Gupta has it a bit backwards, and the suppressed nervous energy in the amygdala is causing the conscious mind to rationalise the anxiety with a distressing thought; rather than the other way around. Time will tell.
Cheers,
Graham
Christine Lock · August 30, 2013 at 10:56 AM
Hi Graham,
I just wish I had come across your blog earlier!
I too was diagnosed with CFS/Fibromyalgia and an Auto Immune Disease of the Thyroid in 2008. 4 years later, I am Auto Immune Free, fatigue free and having many many fibro pain free days, I’m talking months on end without pain. I am back to around 90% functioning like a ‘normal’ human being as compared to being bed ridden, suicidal and manically depressed for 2 of those 4 years.
I find it so inspiring and amazing seeing people blog their hearts out in chronic illnesses and in their depths of despair. I also think it’s amazing that some greater understanding around these invisible illnesses are arising due to people doing just this.
Keep up the great work and keep on truckin’! There is light at the end of the tunnel. I promise.
xox
Graham · August 30, 2013 at 11:32 AM
Thanks Christine; yes, I seem to be on the mend now too. I appreciate your encouragement. 🙂
Brandon · May 17, 2014 at 5:20 AM
How did you get better?
Graham · May 27, 2014 at 12:56 PM
I’m not fully better, but I’m about 80-90% of the way there now. The short answer is a combination of slow breathing, meditation, decent sleep, Mickel therapy, a diet avoiding sugar and carbohydrates, and fun graded exercise. Cheers, Graham
Matt · May 9, 2013 at 2:25 AM
RE: Overactive immune system.
I’m firmly of the belief that this is a symptom rather than the cause, I believe that for most people ME/CFS is a nervous system condition, chronic fight/flight response and as a consequence the immune system goes into overdrive.
The reason why some people advise taking immune boosting supplements is that whilst a majority of people with ME/CFS actually catch less colds etc due to the aroused state of their immune system, some people experience an immune system crash that makes them especially vulnerable to anything that is going around.
Anyway good luck with it all, from experience Somatic Experiencing and TRE seem to offer the best treatment that provides a solid underlying diminishing of symptoms, as opposed to some treatments where symptoms diminish but then come back, any improvement I’ve found from SE and TRE has been maintained, which is great, although they can take a long time, patience is the key when dealing with trauma, the body will only release what it can at that moment, go to fast and you risk re-trauma.
Graham · May 10, 2013 at 11:52 AM
Thanks Matt. Yes, it does seem to be a nervous system condition. I totally agree with you. Cheers, Graham
James Trickett · August 4, 2012 at 7:44 AM
Hiya Graham!
While deciding whether to blog my own ongoing recover, I decided to look at blogs for inspiration. Mate, think yours is the best so far, really enjoy your style and personality. I’m 35, live in UK write my own songs, busk others, and am writing my own comedy sketch show – so I completely buzz off where you’re coming from.
I’ve been recovering for 9 yrs, glad uve discovered mickel early – it’s helped me this year when I had a free session for M.E Awareness Day. I’m gonna look into the other things you mention, you’ve clearly been productive in your health journey.
I wanted to write for a couple of reasons, firstly because I noted your anxiety and I’ve found something that helps my own. I was getting mad anxiety and started with panic attacks in bed.
mickel says anxiety’s source is the “anger family” of emotions like anger and frustration… so I started yelling (and also sometimes punching soft furnishings shouting Kaaaaaa! with the punch). I got great effects – the shouting immediately relieves the anxiety, leaving a wonderful sense of peace I hadn’t found outside yoga and meditation, and also significantly picked up my energy over a couple of days, enabling me to start working in a charity a few hours a day in addition to writing the comedy.
hope this helps!
secondly I wrote to say well done on the blog – it can be difficult to be positive, entertaining and informative when writing with fatigue but you’ve managed all 3.
Hope the beach guitar pick up method works heh heh. Tis something I’ve tried myself, it’s good for the soul even if you don’t meet a bikini model every time you venture out.
Thirdly, in January I did a modified version of the Lightning Process – a stop routine on the improper thinking the illness brings on – and that has really brought down my anxiety thinking in general, and I finally started sleeping pretty normally again because my body was more relaxed.
today I’ve spoken to a girl who was wheel chair bound from M.E but recovered entirely with the original lightning process within 18 months and has been at PEAK health for years now. said she’d have recovered quicker if she’d believed she deserved great health and a great life and that the illness wasnt her fault.
She’s told me to start using it on my feelings like the heavy fatigue I still get, saying it’s brilliant for that. my clinic (Optimum Health Clinic, London) follows the mickel and reverse therapy model that feelings should be accepted and honoured and actioned not replaced. (they recommend EFT more for use on feelings, tho they say ‘start with a STOP’ then EFT any remainder.
I’m gonna try following her advice and doing the STOP / Lightning Process on the fatigue. I can update u if u like! I’d certainly be happy to stay in contact anyway – u got my email if you wanna know more or chat. I’m also on skype. I’ve stayed clear of m.e support groups etc because they all don’t believe full recovery is possible when it clearly is.
best wishes,
Tricky 🙂
Graham · August 4, 2012 at 8:35 PM
Hey James,
Thanks for the comment; I really appreciate your positive feedback. I’ve had a bit of a bummer of a day today, so I’m very grateful for your appreciation of my little blog. In my dreams I’d love to be a successful writer; I seem to have what it takes by my lack of self-belief keeps undermining me. I totally get what your friend said about recovering more quickly if she believed she deserved to be well. Negative beliefs seem to take a hold deep down in the subconscious… I find them damn hard to shift.
I also find yelling helpful when I’m anxious; pretty soon the anxiety turns into anger (often about being anxious) and then I’m angry for real. I had a big screaming match at myself in the car this morning while driving. Lots of things seem to make me angry these days. I never really used to feel angry and thought that was a bit odd. I did a whole bunch of emotional healing workshops to get in touch with my anger; and it seems to have worked. Now if that anxiety will just fuck off, I think I’ll be a lot happier. Todays rant was triggered by recovering from the flu… and going back to the usual yuppie flu symptoms. Argh, that gives me the shits.
My skepticism of the lightning process, the gupta program and mickel therapy seems to keep getting in my way. I sent an angry email to my mickel therapist yesterday; he must hate clients like me. The whole thing pisses me off; no wonder I’m in a bad mood today.
Thanks for the contact, let’s keep in touch.
Cheers, Graham
Linda · May 6, 2012 at 4:30 AM
Hi Graham,
I had CFS for 7 yrs and one day it just started going away. I had been working a stressful job and had recently quit. Maybe this was some kind of a catylist but basically I just avoided any supplements – especially ones that boosted the immune system. I read a lot about the condition; went to support groups and I came to the conclusion it is an immune dysfunction disorder.
I just exercised moderately – rested when I could ( I was a single mom of 2 difficult children) and once I discovered allergies I had developed during the illness and avoided all those foods and chemicals (I had a lot) I felt better that way too.
But after the major symptoms subsided drastically – It still took several years for me to achieve a 90% wellness. Physically I have most of my energy left, but mentally I’m not the same – and that is frustrating! I even laugh differently and my attention span is shorter, and memory is lousy.
I’ve read how other people have recovered also and they are all different lengths of time that they were sick.
You will get better – it’s just a matter of time. Reduce stress – no immune boosters (including vitamins) discover any allergies (including food!), avoid too much sun, and for headaches use plain aspirin.
Good luck
Linda
Graham · May 15, 2012 at 11:02 AM
Hi Linda,
Thanks for the advice. It’s a little difficult to know which advice to take, given so much of it is contradictory. I’ve also thought to myself “if it’s an immune system over-responding, why are people suggesting taking things to boost your immune system?” I’m certainly looking forward to the day it “just starts going away”. (Yeah, yeah; I know somebody will chime in about acceptance and not resisting life… blah blah blah)
Cheers,
Graham
Karla · October 31, 2011 at 9:56 AM
Hi Graham,
sounds to me like you’re on the right track. I’m now recovered from CFS and I attribute my recovery to taking the wholistic approach and the support of a fabulous doctor whose specialty is integrating medicine with alternative practices. Even now when I feel a bit depleted I take a step back and look at my lifestyle, my attitudes, etc. and can usually turn things around in a matter of days. It can take some time to recover and it’s trying and, not to make light of the illness, but I’m happier and healthier than I was before CFS.
Take the best of care!
Karla
Graham · October 31, 2011 at 12:02 PM
Thanks Karla for the kind words of encouragement, I really appreciate it. I think learning to slow down and be kind to myself is the biggest thing for me right now, and that seems to be working. Cheers, Graham
Kate · February 13, 2010 at 12:33 PM
Graham,
Thank you for your blog. I just started the amygdala retraining today.
Wondering how you are doing. I haven’t seen an update in a few weeks.
I will keep you posted as I proceed.
All the best of luck for both of us.
Kate
Graham · February 13, 2010 at 5:26 PM
Thanks for the encouragement Kate; I think it’s really important to network with other people on the program to keep the encouragement up. I posted a new update today. Feedback definitely helps keep me motivated! Keep in touch.
Ian · February 9, 2010 at 11:10 AM
The Gupta program and the others like it are the worst kind of pseudo junk science imaginable. You people are being conned, and you want to believe in this because you want to be cured. And I feel your pain. But there are real known causes of CFS like this -> http://www.youtube.com/watch?v=9ylnQ-T7oiA
and many others but no one will talk about these. It’s much more profitable to treat the symptoms, forever then go after the real causes. And I do say ’causes’ because there are probably many.
Graham · February 9, 2010 at 11:32 AM
The purpose of this blog is to share my experience. It’s a shame you chose not to share yours. Yes, of course I want to be cured. Who wouldn’t?
As far as pseudo-science goes, one of the comments on that YouTube video puts it pretty well: “Mercury vapor is much heavier than air and would drift down instead of up.” So the video doesn’t show what it claims to. My CFS certainly isn’t caused by mercury amalgam fillings because I’ve never had any.
So until a better theory/treatment comes along, I’m sticking with the idea that it’s a self-perpetuating stress-related illness.
Graham · January 13, 2010 at 8:55 AM
Thanks for the encouraging words! I’ve been into personal development for a long time, so it’s quite perplexing that I came down with this when I did. But nevertheless, it is forcing me to take meditation and breaking of limiting beliefs a bit more seriously than I have in the past. There are so many things I want to do, I just can’t wait to get better to do them… and this desperation probably isn’t helping me. Maybe it’s the whole reason I feel ill! I hope you have /are recovering too…
Sophia Ciocca · September 10, 2016 at 2:52 AM
Hi Graham,
I know this comment was from six years ago, but it resonates with me profoundly. I came down with CFS this past March, and some of the advice and potential solutions made me so angry — I’m already into personal development! I’ve been a meditator for two years! I already do yoga! …but maybe my obsession with these things is part of the problem. I’m learning that I’m so hard on myself and perfectionistic about “working to improve myself”, that I’m sending the message that “I’m not good enough as I am.” I’m realizing that this negative core belief has been a driving force for my entire life, and perhaps this CFS is finally a wakeup call. It’s no fun at all (actually, this might be the definition of hell), but I feel certain that I’ll have learned an awful lot and be better off when it’s all over.
I’m curious how you’re doing this year — is the CFS still totally gone? Thanks again for writing this blog; it’s an amazing resource.
Sophia
Graham · September 12, 2016 at 4:23 PM
Hi Sophia. I totally agree that the hidden catch in personal development is: not accepting yourself as you are right now. My CFS is still a work in progress, but I’m getting there. For me it’s all about accepting how things are right now; while still taking whatever action I can towards my goals. One of which is being 100% well. And yes, there’s a paradox there because that’s not really accepting how things are right now. No wonder our heads spin…
Eelco · January 13, 2010 at 7:28 AM
Hey Graham, im pleased to read you have discovered the amygdala retraining program. I’v been doing it more or less over a year and it certainly helped me. I must say im a bit jealous you discovered this method fairly quick after getting cfs. Iv had cfs for over a decade and getting an explanation and the tools would have been golden earlier on !
My tip for now.. don’t focus on getting better (from a negative viewpoint), focus on healing yourself instead.. mind body and soul. It may sound weird, but see the illness as tool for learning. What better to teach you than this ? The information in the program can be a start to transform yourself into someone way better than you were b4 you got ill. Hope you can see this and get the motivation from there. Its not getting back to “normal” its all a learning process to get great !
Good luck ! Ill keep monitoring your progress