Chronic Fatigue Syndrome Recovery (ME/CFS Recovery) after 10 years: CFS Recovery Story about Pacing

Most people seeking Chronic Fatigue Syndrome recovery look at pacing chronic fatigue by varying their activity - but does that lead to a Chronic fatigue syndrome recovery story
10 years is a long time to experience a debilitating illness like Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) a.k.a. ME/CFS, but Stuart Aken finally overcame the illness in a very short time frame once he made key pacing changes.
3 times he had made what he thought was a recovery using the pacing strategy - each time it led to heart-breaking disappointment as soon as he exerted himself.
But 4 years since recovering fully from Chronic Fatigue Syndrome (ME/CFS), he is enjoying a full active life, working as a writer, doing heavy labor in the garden and even running a half marathon. Impressive for anyone his age, let alone someone that suffered with Chronic Fatigue Syndrome - ME/CFS for so many years.
COMMENT: Listen to his story and insights on how to recovery from ME/CFS and share your thoughts in a comment below..
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**MEDICAL DISCLAIMER**: Dan Neuffer, CFS Unravelled or ANS REWIRE do not provide medical advice, and the information available in this video does not offer a diagnosis or medical advice of any kind. The content is opinions and information presented for EDUCATIONAL PURPOSES ONLY, and MUST NOT be used as an alternative to a healthcare professional’s diagnosis and treatment. Only a physician or other licensed health-care professional are able to determine the requirement for medical assistance. Please seek the advice of your physician or other licensed healthcare providers if you have any questions regarding a medical condition.

[@bevillenz]

This was a really difficult recovery story to follow. Especially for someone who is a writer, Stuart gave insufficient detail in how he paced, in the treatments he may have tried at the onset of his illness, on dietary changes that were made, if any, and on why he found his job so stressful. I thought Dan did a good job trying to pry this information out but I sensed his frustration and perplexion at times. If I were Dan I would have asked Stuart why he didn't quit his job a few years into the illness if he had such a deep seated emotional aversion to it and instead chose to became an indentured slave to the stress, even if at part time for 10 years. While the interview header states it took Stuart 2 months to recover by Stuart's account it was actually much more of a spontaneous recovery. Just mystifying. I wonder if this interview is instructive in any way? Is it inspirational? The moral of story would be if you hate your job, find a new one!

[@CFSUnravelled1]

Thanks for your excellent comment. I particularly love your last sentence, the question! It's all about asking these sort of questions! Pacing is a commonly known strategy, so we didn't go into it that much, but and I think we did touch on what he felt was key about his pacing approach. But it is only a snippet in a long interview so easy to get lost. In terms of his inability to quit is job sooner, I am pretty sure that he mentioned financial reasons, but I don't think he connected the scale of the impact his job was having on him. Often these recovery stories have a different message for different people, and we can interpret things differently. I understand your comment about a 'spontaneous recovery', however, it strikes me that Stuart had some core strategies around diet and pacing in place but was lacking the healing environment to allow these to bring about a full recovery. Once the stressor was removed, he got there very very quickly and has been able to exert himself severely both physically and mentally and still remain recovered. Are those thoughts helpful?

[@sammiller2617]

It is entirely possible to pace when bedridden. I was bedridden for 2 years and was v v ill. My initial pacing consisted of propping my head up for 5 minutes every hour and when that became manageable I increased it very gradually progressing to sitting on the diagonal and the finally sitting up. This all took about another 2 years and now I am able to walk for about 15 mins per day. This I am increasingly incrementally. It is painfully slow but along with many other protocols, (diet, gentle yoga, meditation and reprogramming my amygdala), helping me regain my life and an essential part of the jigsaw. So please, if it can work for me it can work for anyone!

[@CFSUnravelled1]

Thank you so much for highlighting this. I have seen many people recover from being bed-bound - you really describe how this can apply to us all, regardless how ill we may be. The thing to realise is that it isn't just physical activity that is to be paced. So even if bedbound, our mind is still going and there is scope for pacing there also. I hope to share your story of recovery one day Sam. :)

[@sammiller2617]

CFS Unravelled absolutely Dan. Cognitive, emotional and psychologically depleting activities all have to be monitored and paced in addition to physical activity. Also imperative to remember that quality rest is distinct from just lying down or doing 'nothing' if your mind is active, hyper vigilant and your amygdala is in hijack mode! That's why relaxation and meditation techniques offer an essential to get the body into a healing state. And yes, hopefully one day, I too, can recount my journey to wellness, there's a long way to go yet though, but I'm determined to get there. Thank you for all you do to keep us going Dan.

[@michaelfortune9997]

sam miller What % of full recovery are you at?

[@Josh-pe5pl]

He says he did the half-marathon and wasn't concerned about ME returning bc he's an optimist. Maybe giving himself a little too much credit there? Glad he cleared it up later. He accomplished this After he was retired from the stress AND he enjoys invaluable support from his wife & daughter. I as an ME realist, have become super-sensitive to the implication that all I have to do is be positive--especially when I'm still stressed and have no emotional support.

[@redheadedfreckles2]

You will be waiting forever if you want to be coddled. My ex left and tried to take my baby and pretend I was crazy. Not everyone has a support system we just have to keep going and to be grateful for what we do have even if it’s only ourselves and God.

[@pennyportrush9039]

Thanks for bringing us another recovery story Dan....keep 'em coming! Thank you Stuart, for trawling back through the years & memories to piece together your story. It really helps people like me who are working towards full recovery😁

[@anneferraro9943]

It seems like recovery time took more than two months unfortunately. Pleased to hear your fully recovered now Stuart. Perhaps being overly optimism and overdoing it over and over, caused the constant setbacks initially for Stuart? A virus combined with long term stress can be the root. I agree support is essential too for recovery. I’m so grateful for my partners support, who keeps strict watch on my pacing :)

[@evelinel.9827]

This man is so cute and charming! Love his laugh!

[@CFSUnravelled1]

Well said Eveline - my sentiments exactly :)

[@Conquerchronicillness]

The night sweats, yes! I sleep in a COLD room, stop eating a few hours before bed, avoid alcohol & processed carbs and it removed the night sweats.

[@trishcovich1923]

Wonderful for you to be well again. Thanks for sharing your most challenging experience and the great tips you used to get well.

[@Grace2Uand2U]

Thank you for sharing your experience. I am ever-so-happy for you! Although I find myself still in the thick of it after 11 years, I have found the only strategy that seems effective is pacing. I've come a very long way from being bed ridden....if I'd only learn! 🙄 Again, thank you Stuart!

[@susanshaw4208]

The honesty and realism balanced with a realistic sort of optimism is so very very helpful. Plus the detail, so that I can see that my situation is so similar to others.

[@heatherinnorfolk]

What a lovely positive story, from such a warm bubbly chap. Shows how we can heal when we have the right attitude, care and support. His wife sounds amazing.

[@yingle6027]

So how did he recover? Who has time to sit through over an hour of talking that doesn't get to the point!

[@dfblake7]

Thank you! I can totally relate to your journey, after about 17 years on a very similar path. I do get the sting in the comments by people who are sensitive to the idea that if you just think positively, you will overcome this nightmare!... Though I don't think this is what Stuart is saying...I understood it as the fact that being optimistic is enabling, as opposed to being crushed by despair. In my experience, it's like optimism or hope as I prefer to think of it, is the bus you need to be on if you want to get to your destination...that bus is useless if there is no petrol in the engine...so you need strategies and support and good food etc...if that makes sense. Basically, hopelessness is a killer, and easy to jump on that bandwagon as ME sufferers know too well...hope this helps someone else to keep going.

[@CFSUnravelled1]

Absolutely Dorothy - it's like the biggest obstacle to getting well is being sick. I know that sounds odd, but we can be so diminished from the experience with the illness that it can be a challenge to mobilise the resources to take action that moves us forward. I know I had given up and couldn't muster the energy (or will) to do anything constructive for many years during my illness.

[@geethanair5803]

Captions should have been there. Like what all measures he took to heal, then it wd hv been easily understood..what he says. Thanks doctor for all your effort, to help ppl understand this difficult case..

[@adinashenry5474]

I am in the severe group, so have been housebound bedbound for years now. Will I ever get better? I have tried everything. Diet, vitamins, this treatment , that treatment, meditation and on and on and yet here I am today writing this in bed still in a severe crash :(

[@c.b1566]

So Stuart had a huge amount of support from his family to keep him 'optimistic' during his years of illness and then he retired and was well within a few weeks. Presumably he was able to do his pacing due to the support he received but it seems almost irrelevant in the larger picture in that it was quitting work that changed everything. Personally not a very helpful recovery story for me though I'm grateful to both men for their time and input.

[@CFSUnravelled1]

Thanks for your positive and constructive feedback. :) I get where you are coming from, although my take is slightly different. It strikes me that the pacing did help him, but because he wasn't able to do it properly given his family responsibilities he never made deeper progress. It seems his job was a huge trigger, once he stopped, he was able to recover. I think these kind of discussions of what we get out of the interviews are really helpful - it's a shame not more people chip in like you have! :)

[@jpw0138]

I find it interesting that he recovered after leaving work. Although he relates it to stress, it is very possible that something in the environment he worked in was causing him to be unwell. The question should have been asked how long after he started working in that environment did he become unwell?

[@ascgazz]

jpw 01 18 months, he says it around two thirds in but there was nothing obvious other than stress

[@Vessenkestrel]

I did really well on half days and felt like I was getting better. But then after a month I was told that my health indurace price would go up due to working half time, and would cost more per month than I earned per month. So now I have to work full time and I am in pain constantly, and can't do anything outside of work because I'm so exhausted

[@sidgdansk6017]

it came upon me after an exhausted bit of trauma..

[@seannewoods2296]

So I would like to add that most of these ones are young. And with these autoimmune diseases ones will go in and out of a remission ype of cycle that can last for years. Later when the body is stressed or immune is hyperactive these diseases come out of remission. It's like a cancer of the immune and nervous system. It will come back. But, it is encouraging to get into remission.

[@ratfacekick]

His workplace was full of mold

[@srmayer9790]

How is the organisation that helped him with info is written?

[@teripurewal1970]

Action for ME

[@adinashenry5474]

What about recovery of older people who are in the severe range , do they recover

[@CFSUnravelled1]

Well, Stuart was in his sixties, but Diane tells her story and was in her 70's. So yes, people recover at all ages.

[@susanshaw4208]

@@CFSUnravelled1 Thanks this is helpful. I am 60 and in a severe crash but I want to get my life back.

[@germanside7890]

[@sonny7987]

how much does ur program cost

[@CFSUnravelled1]

Stuart wasn't in the program - most of the recovery stories I have shared are independant to inspire hope that there are many ways to recover. If you want to learn about ANS REWIRE recovery program for CFS/Fibromyalgia, head to the website: ansrewire.com/info-request/ and also here ansrewire.com/enrol/

[@Charu2111]

Excited to learn about the ANS Rewire. How many people have recovered from this program

[@CFSUnravelled1]

Hi Charanya - the program is a self-help program and not in a clinical setting, so we only get limited feedback. Hence we don't actually know how many people have made partial and full recoveries. However, the numbers keep growing. ;)

[@chloesouthern8082]

@@CFSUnravelled1 hi I suffer CFS and pots and I get fevers any ideas how to stop these fevers. Im scared to do any exercise incase I make it worse. What should I do 😰 x

[@TL-ch1xd]

PS I hardly ever experience fevers anymore or sinus issues. Those symptoms would come if my system was too week/too pressured - but The Biodynamic Treatments have really strengthened my system.

[@MissXenaDog]

Sounds like an East Yorkshire accent