Has anyone been completely cured of CFS?

[Sammy1]

This is old news but the clip shows two ME patients who was cured from the illness:

Press subtitles if you don't see subtitles in english

I have to add that I don't know what happened after the treatment and how the patients are doing now.

 

[beaker]

Technically speaking, no disease can be considered "cured'' w/o the causative agent(s) known. If you can't measure cause you can't measure cure. Remission would be the term to use if symptoms were otherwise resolved.
I think some folk have some remissions to various degrees.
I wish I was one.............

 

[xchocoholic]

Since cfs is an umbrella term it's impossible to say
if people have been cured. Many were dx with cfs only to find
out they had something else. And since many of us have orthostatic
intolerance, it's hard to tell if we have cfs since merely being upright
removes the blood, etc from our upper bodies.

The nih states that celiac disease is being misdiagnosed as cfs
and that 97% of celiacs are undiagnosed. That leaves a lot
of room for mistakes.

Then there's Lyme, heavy metal poisoning, gluten sensitivity
with or without celiac disease, etc etc.

 

[Firestormm]

xchocoholic and yet celiac disease is one of those that should be ruled out before a diagnosis of ME is made. Go figure.

 

[Sparrow]

Im still yet to hear of anyone with a pretty full symptom set (to definately confirm ME) who thinks they have returned to their full health with a year or so under their belt where they did not need to keep taking drugs or pacing their energy expenditure - bearing in mind that I *want* to find people like that! that would be the holy grail. I found one woman on youtube but then she put her ME down to being a candida related thing and almost seemed to say that it was the cause of everyones CFS , all the other promising ones either lacked key characteristics of CFS or quietly mentioned towards the end of their vids that they do not have the energy they used to despite having ways to return to work and normal life. pacing seems to be a constant

I feel like a lot of times people get super sick initially, try lots of things to help, go into remission, and assume that one of the things they were doing was responsible for "curing" them. But in reality, it seems like crash, long remission, then even worse crash is a common pattern for the illness for at least a significant subgroup of people. I wonder how many people who think they're okay now are really just in that deceptive centre block of years. I had a full symptom set. I recovered to full health for more than a year. But it wasn't permanent. I suspect if you asked those "cured" people again in fifteen years, they might have a different answer.

Like taniaaust1, I fit the ME criteria during my initial post-viral crash. I lost years of school. I had terrible mental cognition problems (really extreme sometimes), some POTS (though I didn't know what it was then), extreme fatigue and weakness, loss of stamina, etc.

Then I got gradually better, and went back to school, got married, worked a busy full-time high-stress job on my feet all day, did aerobics, etc. My recovery had nothing to do with exercising and everything to do with rest. My ability to exercise and be active improved gradually as my overall condition improved. I had a mostly normal life for more than ten years. I thought I was "cured".

I was not. I was slowly sinking, but just didn't realize how bad things were getting because the downward slide was so gradual this time around. I kept attributing it to other things (stress? work? not enough sleep?), looking for what could possibly be causing the issue because it just never occurred to me that it could be that initial "mystery illness" coming back to haunt me again. Now I've been bed bound for two and a half years, with profoundly worse symptoms than I had to begin with. From what I've heard, Dr. Bell and others have recognized this as a very common pattern.

 

[xchocoholic]

xchocoholic and yet celiac disease is one of those that should be ruled out before a diagnosis of ME is made. Go figure.

Unfortunately that's not the way the medical profession is dealing with this. If 97% of celiacs are still undiagnosed
we have a long way to go before knowing how many pwcs are actually celiacs. I'm not saying all pwcs have
celiac disease but .. The NIH made the connection at least as far back as 2006. That's when I saw it on their
celiac website. I wonder what else they know ?

Fwiw, most celiacs I know had negative biopsies before finally getting a positive one. These were
symptomatic people too.

This doesn't even take into consideration how many people have gluten sensitivity
without celiac disease. The fda has more info on gs w/o celiac disease.

One aspect of gluten sensitivity
that I find interesting is how many non digestive symptoms celiacs have when ingesting gluten and yet
digestive problems are what doctors are looking for. If they looked at other symptoms, they might catch
this disease before the gut is damaged. Not everyone's gut heals by avoiding gluten.

I'll get off my soapbox now. Lol. Tc ... X

 

[ukxmrv]

I know more long term ME people who have died than been cured. That's been over decades though. Lost many people due to early cancer, heart problems and suicide.

Every now and then a long term person reports a good reaction to a new drug. They may have spent thousands though before that seeing doctors and trying different things.

Dr Ramsay wrote about some of his patients that went into remission and also apparent cures.

Lots of hope on the horizon though. Every new drugs that gets trialled seems to help someone. We are a far too big group of possibility different conditions to know exactly who that will be sometimes.

 

[xks201]

We see fatigue with just about any disease. Some asshat had the audacity to name a disease after a set of symptoms and now everyone is sooo confused. lol

 

[ruben]

I think it's good every now and then that this topic is discussed as this is surely why we primarily visit sites like this. I'm a man in my 50s and have had this since the 1970s. Obviously, in all this time, I have seen many different practitioners using different approaches. In my experience acupuncture can certainly help but it wasn't a cure for me. Now, if you search for cures on the internet you will find apparent accounts of success stories of people using techniques along the lines of Gupta training, Mickel therapy and the Lightning process. In about 2008 I spent my £550 and undertook the Lightning process. However, as I somehow manage to work full-time I found it basically impossible to apply the techniques and work. Now my point here really is this, with the topic we are discussing, would you not think that if there are any cured people out there from these approaches they would declare it on this forum. They seem to be everywhere else on the net so why not on here.?

 

[alex3619]

xchocoholic and yet celiac disease is one of those that should be ruled out before a diagnosis of ME is made. Go figure.

Yes, of course celiac disease should be ruled out, and a lot of other things ... but you can't do any tests, and you definitely can't get them paid for ... have you got the cash? There is a real problem that a disease diagnosed by exclusion does not always have the necessary tests funded by insurance, and doctors are often reluctant to order the tests even if they are funded.

 

[alex3619]

I think it's good every now and then that this topic is discussed as this is surely why we primarily visit sites like this. I'm a man in my 50s and have had this since the 1970s. Obviously, in all this time, I have seen many different practitioners using different approaches. In my experience acupuncture can certainly help but it wasn't a cure for me. Now, if you search for cures on the internet you will find apparent accounts of success stories of people using techniques along the lines of Gupta training, Mickel therapy and the Lightning process. In about 2008 I spent my £550 and undertook the Lightning process. However, as I somehow manage to work full-time I found it basically impossible to apply the techniques and work. Now my point here really is this, with the topic we are discussing, would you not think that if there are any cured people out there from these approaches they would declare it on this forum. They seem to be everywhere else on the net so why not on here.?

This has been discussed before. Here are some possibilities, please feel free to add to the list:

1. They are afraid to. If I were cured by, say, the Lightning Process and read some of the comments here, I might be frightened to post.
2. Their diagnosis is uncertain. They may be well aware that they are not fully sure they had ME or even CFS. It does not have a definitive simple diagnostic procedure.
3. The "cures" failed. They were hopeful for a while, then realized it did not work, or did not work fully. Lots of things have helped many of us, but cure still remained illusive.
4. The number of "cures" is tiny, but looks amplified by the way that anecdotal promotion of products works. Treat 1000 people. 100 go into remission while on treatment. Claim all 100 as a cure, even though you have no idea why they got better. Ignore the 900 who did not get better. Talk to these 100 "cured" and get permission to publish their claims. Maybe 10 respond. Now you have 10 anecdotal claims of cure ... out of the thousand who started. This is how quackery works in medicine. Its why peer reviewed, double-blinded placebo-controlled clinlcal trials of sufficient size to have statistical validity are so important.
5. There are other reasons but, alas, my brain is not co-operating right now.

 

[user9876]

I have come across a couple of people who did seem to have got better. The first who I never met was the brother of a friend who had ME as a kid for a number of years and recovered to live a normal adult life. I met someone else who said they were ill for two years with CFS and described what sounded like PEM. He said it came on suddenly and disappeared suddenly. Again he seemed to be living a normal active life. Neither attributed getting better to any sort of treatment.

 

[xchocoholic]

Yes, of course celiac disease should be ruled out, and a lot of other things ... but you can't do any tests, and you definitely can't get them paid for ... have you got the cash? There is a real problem that a disease diagnosed by exclusion does not always have the necessary tests funded by insurance, and doctors are often reluctant to order the tests even if they are funded.

Alex,

I had an endoscopy just months before figuring out on my own that I was gluten intolerant
so it's not just a matter of funds. I have insurance. I'm not sure if my cfs diagnosis lead to my doc missing
my celiac disease or if he's just a moron. Or both ?

There are multiple "traditional" tests that my integrative doctor ran that came back positive that
my ex traditional doctors didn't run. Hashimoto's, hyperinsulinemia, etc.

I heard "your results are normal" for most traditional tests prior to seeing a doctor who knew what to look for or just cared enough to run these tests.

Maybe my cfs dx lead to my ex doctors not running the tests that would come back positive. Afterall, positive test results means cfs isn't psychological. I just wonder how often this happens.

AND if a test
came back positive, I heard that I was over reacting. In one instance my urine was the color of cranberry
juice but my gp didn't think I needed to go to the ER. Duh !

Imho, most pwcs or ex pwcs who don't post here just aren't interested in keeping up with the "me/cfs"
drama about a bogus illness. We know me/cfs an umbrella term so most (all?) of the data collected isn't of
any value. You can't take a group of people who haven't been properly tested and shown the exact
same results and make decisions about them as a group. Then there's the orthostatic intolerance
angle that should change that pwcs dx to oi but they're not even doing that.

imho, the latest study on pem is just another example of how the medical profession is profiting from
keeping the truth about "me/cfs" a secret. I suspect that my cfs specialist knew the results of that study back in 1992. I failed that same bicycle test back then. I may have been excluded from the
second day of testing due to severity.

I'm here because I hate seeing people go through the same bs I've been thru
and I need to be supine (from oi not cfs) most of the time.

Tc ... X

 

[alex3619]

Repeat exercise testing is only 10 years old, and is only done by people who know the research ... thats not many.

 

[Valentijn]

I have a step-cousin-in-law whom I've never met, but her mother said she was diagnosed with CFS (and was quite disabled by whatever it was, at least), and it was essentially cured by having a pacemaker implanted.

 

[Firestormm]

Yes, of course celiac disease should be ruled out, and a lot of other things ... but you can't do any tests, and you definitely can't get them paid for ... have you got the cash? There is a real problem that a disease diagnosed by exclusion does not always have the necessary tests funded by insurance, and doctors are often reluctant to order the tests even if they are funded.

Coeliac Disease on the NHS Alex. Not routinely screened for but it is tested for - I should know I was tested and had a biopsy at a time when the loose bowels and weight loss etc. warranted it. If the symptoms are suggestive then a patient can at least raise it with a doctor if said doctor hasn't already considered it. It should at the very least be something that ME specialist physicians are on the look out for!

 

[jimells]

Most of my ex doctors preferred to order tests that would show that I'm not sick. That's my impression anyway. One example is a doctor who ordered an echo-cardiogram even though I have no particular cardiac symptoms. I believe her plan was that the echo would show heart-wall thickening, so she could continue to lecture me on "controlling my hypertension", which I don't actually have, and pressure me into taking blood pressure pills, which of course would've made my POTS much worse.

The EKG came back normal. When I insisted the doctor needed to keep looking for what's wrong, she fired me. And the feeling was mutual.

When I finally found a real doctor, the tests indicated I have a chronic viral infection and a chronic bacterial infection, as well as abnormal NK cell counts. These are tests that I asked for - for years!

 

[heapsreal]

Most of my ex doctors preferred to order tests that would show that I'm not sick. That's my impression anyway. One example is a doctor who ordered an echo-cardiogram even though I have no particular cardiac symptoms. I believe her plan was that the echo would show heart-wall thickening, so she could continue to lecture me on "controlling my hypertension", which I don't actually have, and pressure me into taking blood pressure pills, which of course would've made my POTS much worse.

The EKG came back normal. When I insisted the doctor needed to keep looking for what's wrong, she fired me. And the feeling was mutual.

When I finally found a real doctor, the tests indicated I have a chronic viral infection and a chronic bacterial infection, as well as abnormal NK cell counts. These are tests that I asked for - for years!

u should have sent them onto your old doctor

 

[urbantravels]

I have a step-cousin-in-law whom I've never met, but her mother said she was diagnosed with CFS (and was quite disabled by whatever it was, at least), and it was essentially cured by having a pacemaker implanted.

Then the diagnosis of CFS was incorrect, and the person actually had a heart condition.

 

[Allyson]

Since cfs is an umbrella term it's impossible to say
if people have been cured. Many were dx with cfs only to find
out they had something else. And since many of us have orthostatic
intolerance, it's hard to tell if we have cfs since merely being upright
removes the blood, etc from our upper bodies.

The nih states that celiac disease is being misdiagnosed as cfs
and that 97% of celiacs are undiagnosed. That leaves a lot
of room for mistakes.


Then there's Lyme, heavy metal poisoning, gluten sensitivity
with or without celiac disease, etc etc.

Yes I am surprised at that as testing for coelac is easy - just a gene test nowadays
I do think you are right about the OI/POTS - that is a symptom that is often overlooked though
as is Lyme - many are now being diagnosed with that - and Ehlers-Danlos Syndrome ( EDS) - that is genetic though so a cure is not possible yet - though there are management strategies; epigenetics is our big hope for that though.

Cheers,

Ally