Myalgic Encephalomyelitis Recovery Story : His Perspective a Decade Later

Tim shares his Myalgic Encephalomyelitis recovery story and how there was little progress with his recovery until he met with a new practitioner.
We explore his Myalgic Encephalomyelitis (ME/CFS) recovery journey and discuss some of the more subtle aspects of recovery.
Tim shares his views and insights having seen others recover and reflects on his journey as a long-term recoverer being well now for over 11 years after 5 years of illness with Myalgic Encephalomyelitis.
We also discuss the spiritual aspects of his recovery.
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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.

[@phrygianechinoderm]

I really like what he said at 27:28 - a lot of people who come down with these conditions are "Doers" not "Be-ers". I've been sick for 9 years and I still feel lost if I don't have a large project to be working on. Everything else in life is just to fill the time between working on something. I guess I need to work on that. ...hah, or not 'work', on it. Play at it

[@CFSUnravelled1]

When you listen to the recovery interviews (cfsunravelled.com/cfs-fibro-recovery-stories/) you will regularly hear about these changes in terms of how we engage with life!

[@IridescentJen]

@31:36 i agree - i'm single and live alone. and while that makes a lot of things very challenging (i'm housebound and need to hire assistance and shoppers) almost every day i'm grateful that i don't have a spouse or children right now. it's all i can do to barely show up for myself and take care of my needs, no way i could contribute to a relationship during this time. and hopefully this time to myself, to transform into a new way of BE-ing will pay off. it isn't making itself apparent physically yet but mentally and emotionally there have been huge shifts. thanks for sharing these stories, they make a difference

[@gwynhyfer]

I went down with ME in 2005 but wasn't diagnosed until 2012. I became bedbound for a few years and housebound for most of my 50's and didn't know if I would improve, stay the same or get worse. However, I did some research and saw that people with ME/CFS are recommended to try ketogenic diet. It helped a bit but the last three years I have transitioned to OMAD carnivore and I am 95% recovered. No more joint pain, regular sleeping patterns, lost three stones and am able to do diy, be out with my horses and dogs and generally enjoy socialising again. At 64 I feel and look younger than at any time during my 50's. Basically we're on our own...

[@gwynhyfer]

Just to be clear, my diet is completely meat, fish, saturated fats (no seed oils) and some dairy based products such as butter and double cream. I noticed a significant difference in my symptoms just six weeks after starting the diet. My husband, vegetarian for years and extremely skeptical at first, not only encourages me but is joining me by becoming ketovore - a pared down version of carnivore. I'm not saying it would work for everybody but it definitely worked for me.

[@thenorthernsewist]

Thankyou Tim, I loved your story, it was very uplifting and encouraging. God Bless and Thankyou so much for sharing your story with us. 🙏🏻❤️

[@aussiesparks]

Im a male in my mid 20s and i find it hard to relate to most female cases of cfs. When i finally do find a males perspective of the illness i resonate deeply with the way they describe the illness.

[@CFSUnravelled1]

Yes I know what you mean. I have lots more recovery interviews with men that still need to be published - hope to get those to you as soon as I can. IF you are on the email updates list you will be notified when they become available. :)

[@aussiesparks]

cheers mate, it's always good to hear other peoples recovery stories instead of the doom and gloom negativity that makes up 99% of the internet when it comes to cfs. I know recovery is possible, im still trying to find my own thing that creates an upwards turn. :)

[@CFSUnravelled1]

Good for you - you might like to check out ANS REWIRE (ansrewire.com/) to see if it is a good fit for you. :)

[@SirenVosa]

True. Males I know seem focused on theirbrain fog & fatigue. They don't seem to have the other long list of symptoms girls have. As a female, my brain fog isn't even as bad for me as the other symptoms which really destroy me.

[@penelopelambson9128]

Glad he could find a source of recovery. What a gift. I could identify with so much of his story.. the extreme brain fatigue, not being able to finish a brief walk ( or how many times I have left a grocery cart full and walked out bec I couldn’t finish shopping) etc. it seems that the earlier this is caught the more possibility there is for recovery. After becoming sick in the mid 1980’s and not finding effective help since , I find that aging compounds the problems. My best source of help has been diet. Eliminating refined sugar almost entirely for decades has really helped. Am now taking a GABA formula supplement for sleep and it is helping in several ways. Just looking for relief at this stage.

[@iangunn8768]

Why when people hear about someone recovering, do they decide that he didn't have ME. Have they given in?

[@CFSUnravelled1]

Yes they have, which is understandable when you try so many things. I think that hearing that it's possible is offensive to them because it suggests that there is more for them to do, and frankly, they are over it!

[@christinabernat9681]

fabulous interview. Cannot say enough about the insights it gives. I will be sharing this with many.

[@CFSUnravelled1]

+Christina Bernat Thanks for sharing Christina. If you want to be updated of new interviews, make sure you subscribe to the channel. If you want to be notified of other recovery resources, make sure you are on my email list! :)

[@carolynomm4013]

I some how failed to hear the mention of the experience of orthostatic intolerance. That i find very debilitating, that leading to the brain fog, etc. me/cfs is only diagnosed through a process of elimination, and being drained can come from all kind of biological and mental situations, what ever it was, i am glad for this mans recovery. I am learning acceptance, being in the present. Like the comment on doers, driven people and having to drop every thing, a new awareness, in the world but no more off it. me/cfs is life changing for sure. Mind the mind, depression over what was is a bad snag to get caught on. Making little things with my hands keeps my mind in the present, and looking forward. The clinical psychologist i had was of great help. No matter what, keep smiling.

[@travisr6959]

Right on. He didn't mention orthostatic intolerance. 90% of my symptoms come from my POTS syndrome and are attributable either to being seated too long or standing for too long. None of the drugs I take have helped return me to the condition in which I once was. I used to run 3-4 times a week, was extra trim and was always in shape. Now I'm just a 44 year-old man who cannot work due to his disability. We need to keep advocating for a serious cure for this. Far too many people have been sidelined.

[@SuperBitsandBob]

I'm confused and this is maybe why ME and being diagnosed with ME is in such a mess. Apart from fatigue, this chap seems to have had no ME symptoms at all pretty much? And yet the video is called "recovered from ME". With the greatest respect to this man it really doesn't sound like ME but some form of liver disease and after being treated for that with herbs, he got better. Really if herbs cured ME we would all be taking them.

[@CFSUnravelled1]

yeah, I don't see how simply taking herbs is going to get you out of ME either. I don't think that was the message. People often have a range of other dysfunctions and illnesses along with ME. The liver issues are also common in ME for a range of reasons - although in this case it was non ME related. It's interesting that you didn't connect his experience with ME - to me it was definitely there. Thanks for your thoughts.

[@clubadv]

SuperBitsandBob same thought here. He didn't have ME, maybe just reactivation of a virus.

[@SirenVosa]

Is it just me or isn't there a lot of diversity in how symptoms manifest in different individuals? I get the sense it can go in any number of directions but the base is still the same.

[@rickabbott360]

Great interview

[@TheOriginalDadGamer]

A wonderful video and one that resonates so much with myself. I have had m.e. for 2 years and one thing that has worn thin is my faith. I am now on testosterone replacement therapy as it was discovered that my testosterone levels where very low. It's early days but I'm am hoping that this is MY answer to getting better.

[@HealthRecovery]

+The Dad Gamer sorry mate but I'm going to be brutally honest with you here.. low testosterone is a result of your declining health. You need to fix absolutely everything and be dedicated to recovery. I see you're a gamer aswell, what i say next will not please you but that is counter productive to recovery. When you play high intensity games it keeps your body in a adrenaline / flight or fight state. What is your sleeping pattern like? If you're going to bed late after playing video games that is going to mess up your quality of sleep which inturn hinders your natural testosterone levels.

[@christinabernat9681]

+Based Health great poonts!

[@HealthRecovery]

Christina Bernat :)

[@CFSUnravelled1]

+The Dad Gamer Single treatments are rarely the answer, and we need to go beyond just treating symptoms. I recommend that you watch the explanation videos with the 5 keys to a successful recovery on my website - cfsunravelled.com/how-recovery-happens/

[@Spiritpup5]

I have a friend that is suffering from M.E. now. I try to give her all the support I can, because that's all I can do

[@CFSUnravelled1]

Such support is very helpful. I hope she is discovering hope through these recovery interviews!

[@SirenVosa]

Thank you. We get so little love & support and need it so bad. If anything people tend to be pushy and trample on us or forget about us altogether.

[@bevillenz]

It would have been helpful to specify the Chinese herbs that were helpful for Tim.

[@michaelfortune9997]

You need to go to someone who will look at you as an individual and tell you what you need. Directly copying other people 100% may not be the best way to approach things..

[@SirenVosa]

Chinese medicine is individual-specific.

[@christinabernat9681]

perhaps you could add the wording chronic fatigue and fibromyalgia into the title?

[@matttelfer1409]

I had all of these symptoms and it was Lyme disease.

[@clubadv]

6 minutes in I realized he didn't have M.E. Just because a Dr. Abroud said he did based on symptom description doesn't mean he had it. He should have gotten second opinion.

[@CFSUnravelled1]

Interesting - many people get very skeptical about people who have recovered having had ME, which is why I go into the symptoms in so much detail. No doubt that he had an infection that triggered his ME, but I don't see why you felt he didn't have it. Have you listened to the other recovery interviews? Did you think any of them had ME?

[@charquintaochoa2932]

David Geffeney. right

[@christinabernat9681]

after the ME I mean

[@CFSUnravelled1]

+Christina Bernat Good idea! Thank you.

[@christinabernat9681]

thank you, and I did subscribe - with pleasure!

[@tadghb]

He didn't have M.E. or is just another scam artist.

[@CFSUnravelled1]

Respectfully - that makes no sense to suggest that just because someone recovered they didn't have the illness. The scam artist comment is also uncalled for - what would he be scamming for??? Just silly.

[@stephaniemgf]

Sorry that this man was sick for 2 years and glad for him that he's better, but to say he had a "long term case" is very misleading (www.ncbi.nlm.nih.gov/pmc/articles/PMC5464362/) For ME/CFS 2 years is a case of short duration. On average, 75% of people w/ ME can't work, 25% are housebound or bedridden. I've had it for 32 years and have been severely disabled by it for 29. I am "lucky" in that I can leave the house for an errand or social event (but NOT both), and a shower would have to be on a day I'm not going out about 1 day in 2 or 3. And yet I look fine, which is very confusing to people.