Recovery Story Survey Suggests Some Commonalities

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Of the ME/CFS and Fibromyalgia ones in this small survey.
Nobody used drugs. All used natural means and mind/body/meditation was common.
My guess is these are probably amongst the more common ways to recover. It does not mean that everyone can recover using these approaches. It suggests that some people can though.

http://arogayoga.com/stories-of-healing-from-chronic-fatigue-syndrome-fibromyalgia-and-other-chronic-illnesses/

  • Katherine used Kundalini yoga
  • Kate used meditation and yoga
  • Alicia used lifestyle, diet and psychological changes
  • Beth used meditation and mind/body approaches
  • Edie used natural medicine, diet, and gentle exercise such as yoga or tai chi.
  • Michelle used pilates, massage, diet, and acupuncture
  • Raeya used lifestyle, nutrition, and fitness.
  • Claire and Steve used the Lightning Process.
 

MAC

Member
Australian members of the forum will be familiar with the story of Belle Gibson.

"Diagnosed with a brain tumour aged 20, Gibson had four months to live. She blogged her journey of radiotherapy and chemotherapy, treatments she shunned after eight weeks. Instead, she cut gluten and dairy and turned to oxygen therapy, craniosacral treatments and colonic irrigation. Against all odds, she made it. Her followers were inspired. If Belle could make it, maybe they could too.

Gibson launched The Whole Pantry app in 2013, filled with healthy living tips and recipes. She promised a third of proceeds from the 300,000 downloads ($3.79 per download) to charity. Elle named her “The Most Inspiring Woman You’ve Met This Year”, Cosmopolitan awarded her a “Fun, Fearless Female award” and Penguin published her cookbook. Apple pre-installed her app on Apple Watch and flew her to its Silicon Valley launch."

Turns out the illness was a complete fabrication. Yep, no cancer, no chemotherapy. And there are other examples.

http://www.theguardian.com/society/2015/apr/29/jules-gibson-munchausen-by-internet-sickness-bloggers-fake-it-whole-pantry

I'm not saying that many people who are sharing their stories of recovery from CFS are frauds and, as a sufferer myself, I certainly want people who recover to tell their stories. But I think it is sensible to take recovery stories with a grain of salt. Especially if the person is profiting in some way from the telling of their story.

Even if people sincerely believe their recovery story, it may still not be correct. I'm sure most people with CFS make changes towards a healthier lifestyle and try natural healing approaches. Some of these people will recover or go in to remission. There isn't necessarily a causal relationship.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
It's possible. I don't know that these people are doing other than telling their stories but as with everything anecdotal some skepticism is warranted. We know too little about them to be otherwise.

There are some real sicko's out there, though! I'd never seen that story before - really eye-opening.
 
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LondonPots

Active Member
I must admit to feeling very cross when I read these 'recovered through yoga' or 'the lightning process saved me' stories. I tend to assume that they actually had one of the following:
  • a disorder other than ME/CFS that could be self-healed, with care
  • simple lifestyle exhaustion (stress, bad diet, no exercise etc) that needed to be resolved
  • ME/CFS that was caused by something that had itself expired/remitted.
Or....that they've spotted a niche desperate market for their coaching/book/video.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I tend to think that they were able to put their bodies into "rest and digest" that helped them heal and that was enough for them. Your last guess may be spot on. There's Dan Moricoli's story - very sudden onset - horrific disability - and slow but almost complete if not complete recovery using very carefully paced exercise, meditation and yoga. I think he must have had some sort of viral onset that waned but left his body shattered and he was able to slowly pick up the pieces.

People like Toni Bernhard are different. She's very accomplished in these techniques - uses them to great affect - but is still very sick...She can't get her body to the place where it can heal basically on its own.
 

Issie

Well-Known Member
Some of us get better ----- get under stress and have another flare. Scary cause you hope you aren't going down again. Just have to take one day at a time. Enjoy the improvements for the day and hope tomorrow will find you improving.

Issie
 

tatt

Well-Known Member
I'm not selling anything - quite the opposite as I'm quite prepared to say some things didn't help at all - and I'm not fully recovered. But I'm a lot better than I was because I read these reports carefully and try the things that seem to have a scientific basis. So for me that rules out the lightning process. Yoga exercises didn't help but yoga breathing helps me when I fell wired. Wouldn't waste time on the lightning process.

It really annoys me when people say oh that's not ME then - maybe it isn't and maybe what you have is not ME either. Or maybe we both have ME and different other problems that also need to be dealt with.

So far I've met (virtually) one person who really could say they'd tried a lot and hasn't recovered - but they have severe problems with nausea so many things that might help are ruled out. There are a lot more people ready to knock things they haven't tried (like me and the Lightning process :))

Sorry if this sunds a bit tetchy, it hit a nerve
 
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PamJ

Active Member
Cort, didn't several people recover with Valcyte or Valtrex? I believe they worked with Dr Lerner.
Also, Cort, you seem to have less brain fog and mental fatigue than many with CFS-ME. Have any treatments improved your health?
 
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tatt

Well-Known Member
and cort - you didn't mention another thing that comes up a lot, changing diet. Most people who recover from ME have made considerable changes to their lives. They are willing to try many things until they find something that works and to make difficult changes if that helps their body to heal.

btw can you change the "active member" bit as it seems a bit inappropriate. Being active still has a tendency to make me ill.
 

Strike me lucky

Well-Known Member
Antivirals help and improve some people but dr lerners idea of recovery isnt 100%. He classed recovery as anyone who a 6 out of 10 on his disability score. Nothing to sneeze at though moving from a 2 or 3 to a 6 though.

also the percentage of people who never require avs again is much smaller . It seems to be a cycle of going off and on avs or alternating between the stronger valcyte with famvir or valtrex to keep viruses down.

I have gone from a 3 to an 8. I seem to vary between 6 and 8 now. I have diffetent immune dysfunctions i believe that keep allowing these infections bacterial and viral to raise their heads .

At the moment the best we can do is plug holes and lucky if in herpes virus sub group as treatments are available .
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Cort, didn't several people recover with Valcyte or Valtrex? I believe they worked with Dr Lerner.
Also, Cort, you seem to have less brain fog and mental fatigue than many with CFS-ME. Have any treatments improved your health?
For sure - check out the recovery stories section -http://www.cortjohnson.org/forums/recovery-stories/ and you'll see some antiviral recovery stories and more are coming.

NO treatments have helped me longterm except oddly enough - The KPax immune supplements are - my cognitive processed are definitely effected but not like others.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
and cort - you didn't mention another thing that comes up a lot, changing diet. Most people who recover from ME have made considerable changes to their lives. They are willing to try many things until they find something that works and to make difficult changes if that helps their body to heal.

btw can you change the "active member" bit as it seems a bit inappropriate. Being active still has a tendency to make me ill.
Check out the Recovery stories section for many more ways people have recovered - http://www.cortjohnson.org/forums/recovery-stories/

I will try and think of another adjective.
 

Croatoan

Well-Known Member
Antivirals help and improve some people but dr lerners idea of recovery isnt 100%. He classed recovery as anyone who a 6 out of 10 on his disability score. Nothing to sneeze at though moving from a 2 or 3 to a 6 though.

also the percentage of people who never require avs again is much smaller . It seems to be a cycle of going off and on avs or alternating between the stronger valcyte with famvir or valtrex to keep viruses down.

I have gone from a 3 to an 8. I seem to vary between 6 and 8 now. I have diffetent immune dysfunctions i believe that keep allowing these infections bacterial and viral to raise their heads .

At the moment the best we can do is plug holes and lucky if in herpes virus sub group as treatments are available .
I went from a 2 to a 10, and still a 10 after 18 months. No anti-virals needed. anti-virals made me fell a bit better in the past, like you.
 
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ShyestofFlies

Well-Known Member
I have to admit I am not a big believer in life style changes as effective reliable treatment in disorders where populations and lifestyles prior to the start of disease or illness begining are so varied. Seems like a good topic to start a survey about- I'll begin working on one tonight.

Let's say these people all had the same disease/illness to begin with...
  • Katherine used Kundalini yoga
  • Kate used meditation and yoga
  • Alicia used lifestyle, diet and psychological changes
  • Beth used meditation and mind/body approaches
  • Edie used natural medicine, diet, and gentle exercise such as yoga or tai chi.
  • Michelle used pilates, massage, diet, and acupuncture
  • Raeya used lifestyle, nutrition, and fitness.
  • Claire and Steve used the Lightning Process
What do these all have in common that can be extracted from this group of individuals.

Gentle theraputic stretching based exercise (how has exercise changed throughout their progression)
Diet (what were the diets like pre-illness, during illness, and during recovery)
Psychological, mental therapies (what is that traditional therapy, religious counseling, sudoku?)

This honestly doesn't sound that far off from an anecdotal "exercise with GET and see a therapist for CBT" (plus eat better), but from a natural point of view rather than a traditionalist western POV. I'm not saying I don't believe these self reports, or that I don't believe they were sick, but I am slightly skeptical when the treatment methods sound like the naturalist version of PACE methods?

But realistically, I think unless you are a fitnessy foodie mentally flossing person who can afford a trainer and a dietician and the best in mental health doctors (or just being mentally well) there isn't a person who wouldn't benefit from stretching, eating better, and practicing mental hygiene. So how great was the improvement on all factors compared to healthy controls, and how sick were they to begin with.
 
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Merida

Well-Known Member
I have read quite a bit about the power of focused intention - especially among Medicine Men, or shaman. Maybe, the bottom line for such healing ( as mentioned above) is 'simply' focused belief and intention. I have experienced symptom changes and relief with this approach from a few gifted people. But, still not well.
 

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