Do People Really Recover From ME/CFS and/or Fibromyalgia? An Inquiry - Dan Neuffer

[Cort]

I'm not against recovery stories per se. I think people have to do what's right for them. And if something works for them, they probably should share the information on boards like this.

My earlier post about being skeptical comes from the perspective of someone who's been sick for 24 years. As others have posted, recovery is not the same as improvement. Many of us can take steps to improve how we feel and what we can do. But I personally know no one who has recovered from what I have, though I believe it's possible.

As long as people are not being taken advantage of, they should try any treatment they're comfortable with. Every person and every situation is different. However, you have to balance chasing a cure with trying to live your life. If I had the money and opportunity, I would try any drug or protocol in a snap. But I have to spend my limited resources on trying to survive.

Being skeptical is probably a pretty common outcome for anyone who has been ill for 24 years...

 

[Cort]

I find it irritating that people assume that everyone on these forums is American. I'm Canadian and I don't get those tests either and have no idea what kind of viruses or infections I have. the only treatment I have been offered is to exercise, eat well, take stimulants and play with my niece.

Anyone claiming to have a "cure" needs to be questioned, that's what I'm saying. I will try a few things if there is some sort of consensus or research behind it. Everything I have tried so far has made me worse, including things like vitamin c that are considered harmless. the only thing that's shown improvement for me is pacing.

I'm not against recovery stories and people sharing what has worked for them, but I am against "cures", things that people claim "cured" them instantly. at times some people with cfs are so I'll and desperate they can be taken advantage of. I've been there as have many.

The problem is that the most publicized recovery stories are the miracle cures, and it makes the rest of us look lazy or apathetic if we haven't tried them.

Treating ME/CFS is just very hit and miss...even in the US - maybe particularly in the US because we have more options here...It's frustrating....I think Dr. Klimas said something like enough people recover that we know it can happen; not enough people recover that we really know why...

 

[Snookum96]

Treating ME/CFS is just very hit and miss...even in the US - maybe particularly in the US because we have more options here...It's frustrating....I think Dr. Klimas said something like enough people recover that we know it can happen; not enough people recover that we really know why...

Good point, if 10 people recover and all used different complicated combinations of treatments we have no idea what worked and what didn't and why. Plus if the people had more than one illness or different "subsets" that would confuse things even more. Ugh.

 

[tandrsc]

I would keep my eye on testimonials, though. One might pop up that fits you.

Don't get me wrong. All my best tips have come from your site, they just haven't come from the recovery stories. Here are examples:

• Herbs to balance immune system - informed by your blogs on immune system research
• Herbs to balance nervous system - informed by your blogs on nervous system
• Herbs to help gut bacteria - informed by one of your your blogs on dysbiosis
• Better pacing - informed by one of your blogs on VO2 max
• TENS machine on my ears - informed by one of your blogs on vagus nerve stimulation
• Warm baths - informed by one of your blogs on hydrotherapy
• Tomato juice for headaches - informed by one of your blogs on blood volume
• N-Acetyl-Cysteine - informed by one of your treatment videos (although sadly this has stopped working)
• Leaning against a wall - informed by one of your blogs on Julia Newton and OI (sadly this also stopped helping)
• Magnetic bracelet - informed by one of your posts on biomagnetism (it's too early to say on this one)
• Compression stockings - informed by one of your blogs on Julia Newton and OI (this is next on my list to try)

 

[Donna C]

I believe that many of those who say they recovered (not all) had a huge amount of daily support and access to alternative treatments MOST of us don't have or can't afford. Of course a lot of this can be tied to money. If you have a cook, a housekeeper, a personal assistant, a driver, money to fly to Belgium or some other European country for treatments not available here, can afford the best doctors and most expensive treatments, buy an infrared sauna, etc. I think it is possible to recover but only time will tell if they are cured and then we may never know. The stories I hear are about recovery are mostly of famous people like Cher and Stevie Nicks. I saw a holistic MD who was 100 miles away from me for 9 months. I had weekly white ozone IV's and took a huge amount of supplements and homeopathic medicine and I did improve to the point where I could go back to work. But I didn't have enough money to keep up the treatments indefinitely ($1200+/month) and I relapsed. An understanding family can also provide a lot of those daily support services which help a lot. Also spontaneous remission is possible in a lot of illnesses. But if you have limited finances (a big stressor under normal circumstances), live alone, have no support people around, I think it's highly unlikely. Everyone I personally know has not had a recovery. We have a good day or two now and then, and then we crash. I am giving this one more try with GcMaf under an MD with my own funds and then I am out of options until there is a definitive test and a definitive treatment that doesn't have dire side effects like Valcyte. And I know 3 people who tried Valcyte. None had improvement and one got leukemia which might be tied to the bone marrow suppression of Valcyte.

 

[tatt]

although I kind of mentioned it before I'd like to elaborate on one point - NAC seems to have stopped helping me. Instead of saying "that supplement doesn't help me" I'd like people to consider that supplements are unregulated and that sometimes tests show some have little active ingredient. So before you give up on a supplement completely it can be worth trying a different brand and/or a different dose.

I have tablets of NAC at the moment as I didnt like the taste of the powder, I'm going back to the (cheaper) powder.

 

[Cort]

Tha

Don't get me wrong. All my best tips have come from your site, they just haven't come from the recovery stories. Here are examples:

• Herbs to balance immune system - informed by your blogs on immune system research
• Herbs to balance nervous system - informed by your blogs on nervous system
• Herbs to help gut bacteria - informed by one of your your blogs on dysbiosis
• Better pacing - informed by one of your blogs on VO2 max
• TENS machine on my ears - informed by one of your blogs on vagus nerve stimulation
• Warm baths - informed by one of your blogs on hydrotherapy
• N-Acetyl-Cysteine - informed by one of your treatment videos (although sadly this has stopped working)
• Leaning against a wall - informed by one of your blogs on Julia Newton and OI (sadly this also stopped helping)
• Magnetic bracelet - informed by one of your posts on biomagnetism (it's too early to say on this one)
• Compression stockings - informed by one of your blogs on Julia Newton and OI (this is next on my list to try)

That's cool!

I definitely want to get into herbs in particular....I have a feeling they can be very powerful.

Thanks!

 

[Cort]

I believe that many of those who say they recovered (not all) had a huge amount of daily support and access to alternative treatments MOST of us don't have or can't afford. Of course a lot of this can be tied to money. If you have a cook, a housekeeper, a personal assistant, a driver, money to fly to Belgium or some other European country for treatments not available here, can afford the best doctors and most expensive treatments, buy an infrared sauna, etc. I think it is possible to recover but only time will tell if they are cured and then we may never know. The stories I hear are about recovery are mostly of famous people like Cher and Stevie Nicks. I saw a holistic MD who was 100 miles away from me for 9 months. I had weekly white ozone IV's and took a huge amount of supplements and homeopathic medicine and I did improve to the point where I could go back to work. But I didn't have enough money to keep up the treatments indefinitely ($1200+/month) and I relapsed. An understanding family can also provide a lot of those daily support services which help a lot. Also spontaneous remission is possible in a lot of illnesses. But if you have limited finances (a big stressor under normal circumstances), live alone, have no support people around, I think it's highly unlikely. Everyone I personally know has not had a recovery. We have a good day or two now and then, and then we crash. I am giving this one more try with GcMaf under an MD with my own funds and then I am out of options until there is a definitive test and a definitive treatment that doesn't have dire side effects like Valcyte. And I know 3 people who tried Valcyte. None had improvement and one got leukemia which might be tied to the bone marrow suppression of Valcyte.

I think being able to rest is critical. It's hard to do without support - I agree and few of us have enough money to take all the treatments that might be helpful - I agree - because I'm one of them. ...

Well put IMO.

 

[Snookum96]

although I kind of mentioned it before I'd like to elaborate on one point - NAC seems to have stopped helping me. Instead of saying "that supplement doesn't help me" I'd like people to consider that supplements are unregulated and that sometimes tests show some have little active ingredient. So before you give up on a supplement completely it can be worth trying a different brand and/or a different dose.

I have tablets of NAC at the moment as I didnt like the taste of the powder, I'm going back to the (cheaper) powder.

That's a good point. With no regulation, we could never compare successes unless everyone was using the same brand and strengths. It would be interesting to learn if any regular testing is done by any of the manufacturing companies or a third party.

 

[Petronella Perret]

For me the problem with recovery stories, especially those that seem to show that a particular diet or regime or supplement supported the recovery, is that we can't know what was responsible for the recovery. It's the old question of causation vs correlation- that is, would the person have got better anyway whether they took supplement x or followed diet y or not ? Even if they are convinced it was that regime, it may not have been, and if I spend what little energy and / or money I have pursuing a similar regime, would it work for me?
So for me the focus you put on getting more scientific research done and on helping to disseminate and explain that research is really great. Thanks for doing such a good job with this website.

 

[Forebearance]

I think the biggest problem with the recovery stories right now is that they're all over the map. The real question for all of us is what works for us. In order for any one to have a shot at answering that way we need to find people with similar kinds of illnesses. For that we need details - type of onset/symptoms/lab test results/treatments used that didn't work/ treatments that did work......We have some of those details in the recovery story program but they're only showing up for some stories.

Ideally we need a system where we can find our match and see what worked or didn't work for them..

I think this is what joey and Rachel are trying to do with their website "Healclick".

 

[Hari]

So many of us have been frustrated by the need to ‘prove’ our invisible illness with the medical community, our family and our friends. It’s ironic that some of those same people now have to prove they had ME/CFS/FM at all – simply because they got well.

I see what you are saying @Cort. I believe what is more important is: to able to function normally and live happily with your day to day activities.

As per the saying: For those who believe you need no explanation, and those who do not would not agree with you any way.

So the important thing for me is to have peace with myself and start focusing on living at my best and compete with my former self. This is the key to live happily and improve myself.

When I have some very good days I doubt myself if did I really have FMS? This is happening as people in my life did not accept what I am dealing with, plus they will prove me wrong saying that I never had FMS if I am working normally. I will be happy if people prove me wrong on this when I am working full time and leading the best life possible. Not when I am dealing with it.

In short my answer is YES - people recover from FMS / CFS. And we all can recover from the same. It is just a matter of time until we find a solution to all of us.

 

[jewelll]

(I formatted this blog - and added it to the Forums and Dan wrote it - Cort)​

By Dan Neuffer

The Recovery Question

There is much information out there on how to diagnose Fibromyalgia Syndrome (FMS) or Chronic Fatigue Syndrome (CFS) (also described as Myalgic Encephalomyelitis or ME). And whilst a diagnosis can be elusive for many people suffering with this illness, there is certainly no doubt that they are very ill, even if their doctors, family or friends don’t always share this certainty.

[fright]View attachment 633 [/fright]But there is little talk about recovery; how to identify if you have fully recovered from Fibromyalgia or ME/CFS. Why? Possibly because many people including doctors may believe that recovery isn’t possible – or at least not for them or for their patients. After my 4th year of trying to get well again, I certainly myself came to that conclusion and had given up hope.

But in recent years, numerous recovery stories have popped up on the internet. (See Recovery Stories section on Health Rising and CFS Unravelled). However some people believe, probably based on their hard-won experience, that recovery from ME/CFS or fibromyalgia is impossible. In other words, if you recovered from it you never had it in the first place.

Having recovered myself after over 6 years of illness, which at times was very severe, I understand but no longer share this belief. Since my recovery I have spoken with many other people that recovered, some who did so even after decades of illness which has strengthened my belief in recovery beyond my own experience. But of course, not everyone is easily convinced by hearing recovery stories, and for several reasons.

• I suspect that many “recoveries” may be little more than symptom suppression and management
• It’s not exactly clear what “recovery” is
• That recovery can occur in a wide variety of ways is confusing

Recovery vs Cure vs Remission

The dictionary states that

• A cure is the end of a medical condition; the substance or procedure that ends the medical condition, such as a medication, a surgical operation, a change in lifestyle, or even a philosophical mindset that helps end a person's sufferings. It may also refer to the state of being healed, or cured.
• A remission is a temporary end to the medical signs and symptoms of an incurable disease. A disease is said to be incurable if there is always a chance of the patient relapsing, no matter how long the patient has been in remission.

So cure is an “end” of a medical condition which implies that there is no chance of the patient relapsing. That raises the question of whether there are cures for chronic illnesses? In fact most if not all chronic illnesses are managed not cured. Cancer, heart disease, depression, MS, ALD, AIDS, diabetes, the list is nearly endless – can be managed by medication, lifestyle, diet, etc. – but are rarely cured. That suggests that in general with regard to chronic illnesses, the word cure may a misnomer.

Perhaps the word cure also suggests a single treatment or therapy that works the same for everyone with little room for tailoring treatment. Since no such “cure” is known for Fibromyalgia and Chronic Fatigue Syndrome (Myalgic Encephalomyelitis) perhaps remission is more appropriate term to use for those who have regained their health. But that word suggests that their period of wellness may be temporary, that at some point they will or may have a chance of getting sick again. We know this is true, of course, and a survey on Health Rising supports this, but such negative connotations don’t necessarily serve those that regained their health, nor do they set up great expectations for those still working to restore their health.

That’s why my preference is for the word recovery. A recovery is a restoration of health or functioning and can be either partial or full. It goes beyond stopping the underlying disease mechanism – which a cure does. Even people who get “cured” from a disease, still need to make a recovery.

What Constitutes a Recovery From Fibromyalgia/ME/CFS?

I have come across people who explain how they take dozens of supplements, regular IV infusions, hormone treatment and so on, in order functioning fairly normally again. But I ask, if you're managing or reducing your symptoms using a range of medications, hormones and supplements to something that resembles normal health – is that recovery? I would say no. I would say those people are managing their illness using orthomolecular or some other branch of medicine but they are not recovered.

[fleft] View attachment 636 [/fleft]Some people are able to very significantly reduce their symptoms by limiting their physical and mental activity. By avoiding stress, eating the “perfect diet” and staying inside a limited physical activity envelope their symptoms are much reduced or sometimes gone. They feel healthy. Others can participate in most aspects of life – except for rigorous exercise. I think these are cases of improvement – sometimes very significant improvement - but not recovery.

To me, a recovery means that your body’s function is restored enough to allow it to cope with the normal activities associated with full-time work and an active lifestyle that includes doing social activities and exercise, as well as eating a normal diet (normal not meaning good!). Even here, though, there are levels.

I remember when I first felt recovered. My flare ups had ceased and I no longer had pain, fever, insomnia, gut dysfunction or brain fog. But other symptoms were trickier and more difficult to quantify. Whilst I had thought my energy and immune function had returned to normal, a year later, I noticed that my energy levels were still increasing and that my health felt even more robust.

So although I previously thought I had fully recovered, I clearly had not. My reference point regarding what was “normal” health, had clearly shifted during my years with ME/CFS/Fibromyalgia.

In my mind recovery of health has to be about your body functioning well and giving you access to the experience of good health without being reliant on external powerful drugs or severe lifestyle restrictions.

Does Recovery Occur?

Given that definition of recovery – have people fully recovered from this illness? The recovery stories suggest yes and while recovery may not be common it may be happen more often than we think. I have interviewed over 40 people that recovered and met around 200 personally. Given the lack of study in this area, the percentage of people who make full recoveries is impossible to say.

[fright]View attachment 634 [/fright]It’s at this point that some skepticism naturally emerges. I was skeptical myself, pathologically so in my later years of suffering with ME/CFS and Fibromyalgia. I, too, had unsuccessfully tried many of the things people had used to recover from. (In fact, some of those things later worked for me.) Anyone who has experienced a bleeding wallet thanks to never-ending tests, treatments and empty promises will inevitably adopt a bit of healthy skepticism.

For people that have tried many things, including the things those other people used to get well, but despite all that have still not recovered, I understand the frustration. I understand why they might assert that “They didn’t have what I have”. For most of us, most symptom treatments simply do not lead to recovery.

To Have Had ME/CFS/FM or ME or Not?

But can those people go further and say the people who recovered didn’t have ME/CFS/FM or ME?

When people make a full recovery and people say that they never had the illness or had something else, that is too far in my view. There are undoubtedly varying degrees of illness and different secondary dysfunctions that form the syndrome, but suggesting that someone didn’t have the illness based on the fact they got their health back, does not seem very scientific.

If you look at the symptoms and experience of many people that claim recovery, you can see that many were significantly ill. Almost all, for instance, had to quit working. Some became bedridden and many became largely homebound. Many spent years searching for something that might help. Some were ill for decades.

[fleft]View attachment 635 [/fleft]The different treatments used can raise questions as well. People, after all, have recovered in all sorts of ways. I think most people would agree that a person who recovered using antivirals had ME/CFS or ME. But what if “less powerful” treatments worked? What if supplements and herbs in conjunction with pacing made the difference? What if mind/body work played a large role? Or if diet or strict pacing did? Or a combination of “softer” treatments did? People diagnosed with ME/CFS/FM who have had very significant illness have recovered using all these approaches. Does the type of treatment used determine what kind of illness someone had?

Then there are people’s “accidental” recoveries: people who don’t know WHY they recovered. Can you recover from a serious chronic illness without knowing why? My experience and discussions with people says yes. I imagine we looked hard enough in the literature or talked to a doctor you would find cases of people who had recovered from many chronic illnesses where no one was exactly sure why.

Did all these people that claim to have recovered from “ME” or “ME/CFS” or “Fibromyalgia” actually have it? I think it makes sense to look at the details. Both fatigue and chronic pain are often used to define the illness, but we know there are other reasons for such symptoms, even if they are chronic. But I believe that people who had the RANGE of symptoms we associate with this SYNDROME, who saw doctors and tried to get well and whose illness persisted, I believe that they truly had the illness - as we know it now.

So many of us have been frustrated by the need to ‘prove’ our invisible illness with the medical community, our family and our friends. It’s ironic that some of those same people now have to prove they had ME/CFS/FM at all – simply because they got well.

• Dan's Recovery Story
• Recovery Stories on Health Rising (now open to unregistered members)
• Dan's CFS Unravelled Website
• 75-80% Recovered? Post Your Recovery Story Here.

I believe that these people are in remission or not having a flare up of fm/me/cfs unless they are off all medication, nutritional supplements, and have NO symptoms, I have never seen this in any clinical study, discussion or anywhere on the internet. Some people on your recovery site may have lack of nutrition, certain vitamins which can play a roll in similar symptoms and have been misdiagnosed under the FM/ME/CFS by doctors using these names as catch alls. 70 to 80 percent recovered is not recovered, no symptoms is full recovery. I would like to see the Recovery site renamed treatments to live better with these diseases as that is what it is. An alcoholic is never recovered until the next drink.

 

[Cort]

Thanks
All these different options can be bewildering - that's for sure...

For me the problem with recovery stories, especially those that seem to show that a particular diet or regime or supplement supported the recovery, is that we can't know what was responsible for the recovery. It's the old question of causation vs correlation- that is, would the person have got better anyway whether they took supplement x or followed diet y or not ? Even if they are convinced it was that regime, it may not have been, and if I spend what little energy and / or money I have pursuing a similar regime, would it work for me?
So for me the focus you put on getting more scientific research done and on helping to disseminate and explain that research is really great. Thanks for doing such a good job with this website.

 

[Cort]

I believe that these people are in remission or not having a flare up of fm/me/cfs unless they are off all medication, nutritional supplements, and have NO symptoms, I have never seen this in any clinical study, discussion or anywhere on the internet. Some people on your recovery site may have lack of nutrition, certain vitamins which can play a roll in similar symptoms and have been misdiagnosed under the FM/ME/CFS by doctors using these names as catch alls. 70 to 80 percent recovered is not recovered, no symptoms is full recovery. I would like to see the Recovery site renamed treatments to live better with these diseases as that is what it is. An alcoholic is never recovered until the next drink.

Yes, that would be a real recovery - I agree...Some people seem to achieve it - not sure how many - and then you probably have to give several years or more to be sure that it's going to stick...

 

[Cort]

I believe that many of those who say they recovered (not all) had a huge amount of daily support and access to alternative treatments MOST of us don't have or can't afford. Of course a lot of this can be tied to money. If you have a cook, a housekeeper, a personal assistant, a driver, money to fly to Belgium or some other European country for treatments not available here, can afford the best doctors and most expensive treatments, buy an infrared sauna, etc. I think it is possible to recover but only time will tell if they are cured and then we may never know. The stories I hear are about recovery are mostly of famous people like Cher and Stevie Nicks. I saw a holistic MD who was 100 miles away from me for 9 months. I had weekly white ozone IV's and took a huge amount of supplements and homeopathic medicine and I did improve to the point where I could go back to work. But I didn't have enough money to keep up the treatments indefinitely ($1200+/month) and I relapsed. An understanding family can also provide a lot of those daily support services which help a lot. Also spontaneous remission is possible in a lot of illnesses. But if you have limited finances (a big stressor under normal circumstances), live alone, have no support people around, I think it's highly unlikely. Everyone I personally know has not had a recovery. We have a good day or two now and then, and then we crash. I am giving this one more try with GcMaf under an MD with my own funds and then I am out of options until there is a definitive test and a definitive treatment that doesn't have dire side effects like Valcyte. And I know 3 people who tried Valcyte. None had improvement and one got leukemia which might be tied to the bone marrow suppression of Valcyte.

Having resources - not having to work for money or otherwise - being able to afford the best foods and doctors - that can only help - and a lot I would bet.

 

[Strike me lucky]

I believe that many of those who say they recovered (not all) had a huge amount of daily support and access to alternative treatments MOST of us don't have or can't afford. Of course a lot of this can be tied to money. If you have a cook, a housekeeper, a personal assistant, a driver, money to fly to Belgium or some other European country for treatments not available here, can afford the best doctors and most expensive treatments, buy an infrared sauna, etc. I think it is possible to recover but only time will tell if they are cured and then we may never know. The stories I hear are about recovery are mostly of famous people like Cher and Stevie Nicks. I saw a holistic MD who was 100 miles away from me for 9 months. I had weekly white ozone IV's and took a huge amount of supplements and homeopathic medicine and I did improve to the point where I could go back to work. But I didn't have enough money to keep up the treatments indefinitely ($1200+/month) and I relapsed. An understanding family can also provide a lot of those daily support services which help a lot. Also spontaneous remission is possible in a lot of illnesses. But if you have limited finances (a big stressor under normal circumstances), live alone, have no support people around, I think it's highly unlikely. Everyone I personally know has not had a recovery. We have a good day or two now and then, and then we crash. I am giving this one more try with GcMaf under an MD with my own funds and then I am out of options until there is a definitive test and a definitive treatment that doesn't have dire side effects like Valcyte. And I know 3 people who tried Valcyte. None had improvement and one got leukemia which might be tied to the bone marrow suppression of Valcyte.

I have used valcyte and it got me out of a hole. I have also been on other antivirals which have a better safety profile and cheaper than valcyte, and they also helped me maintain the improvements i made on valcyte. Im not recovered but im able to work 30hrs a week. Ive heard of quite a few people who have improved with valcyte and a small handful back to 95%.

So there are responders to valcyte and other antivirals but i think it depends on if one has issues with one of the herpes viruses or maybe more. Its not a cure as such for the majority but if your the right subset they can lesson symptoms and improve ones function.

good luck with the gcmaf. It seemed to be quite big a few years ago but not of late for some reason.

on a few different forums it seems like more mecfsers are finding they have lyme and co-infections. Antibiotics dont seem to be like a cure but do seem to improve those sub groups.