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

I believe people who recovered from ME/CFS/FM actually had ME/CFS/FM if they (questions 1-5)

  • 1. Met the criteria for it

    Votes: 35 36.1%
  • 2. Met the criteria for it and had to stop working or going to school because of it

    Votes: 36 37.1%
  • 3. Met options 1 and 2 and antivrals, immune boosters or other drugs played a key role

    Votes: 22 22.7%
  • 4. Met options I and 2 - and vitamins, supplements, herbs and/or diet placed a key role

    Votes: 19 19.6%
  • 5. Met options 1 and 2 - and mind/body practices including pacing played a key role

    Votes: 18 18.6%
  • I don't believe recovery is possible

    Votes: 22 22.7%
  • I believe recovery is possible but I don't think the people who recovered have what I have.

    Votes: 14 14.4%
  • I believe the people who recovered may have had what I have.

    Votes: 32 33.0%
  • I believe people with ME or ME/CFS or CFS have different diseases (please say more in comments)

    Votes: 16 16.5%
  • I don't believe it's possible to say that people with ME, ME/CFS and CFS have different diseases.

    Votes: 13 13.4%

  • Total voters
    97

Cort

Founder of Health Rising and Phoenix Rising
Staff member
(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]Biceps.jpg [/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] Elephant.JPG [/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]Against-the-Flow.jpg [/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]Tai-chi.jpg [/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.
 
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tatt

Well-Known Member
n England quite a few people given an ME label are found to have other illnesses if properly investigated - some sleep disorders, some psychiatric illness, some other illnesses that are treatable. This does lead me to some scepticism about "cures" and to doubt whether those who have recovered had quite the same illness. However my health has certainly improved with various supplements so I'm still hoping to recover one day.

We all start from different states of health and may have other things wrong with us. I dont find it surprising that some people recover and some dont.
 

corinne

Member
"I don't believe it's possible to say that people with ME, ME/CFS and CFS have different diseases. "

They don't necessarily have different diseases, but subsets of the same one in my opinion. And of course one can recover, the body is remarkable. But recovery to me is complete normalcy...100% return to normal function and I have only met and been witness to one person in my personal life who has said that. I think that if there is a genetic tendency for the body to react to infection as ours/mine does, than the body will do that again in the future when presented with the same sort of circumstances. That is why complete recovery to me seems so rare in my opinion.
 

Karena

Member
I believe it's possible to recover from ME/CFS, particularly in the early stages. However, I am skeptical of most recovery stories. Too many think they have ME/CFS when they don't. Too many doctors use it as a throwaway diagnosis for for people (mostly women) who complain about being tired. Plus, I think it's too easy for people to fool themselves into thinking they're better. There's a lot of pressure from family, friends and society to pretend you're healthier than you are.

Generally speaking, I find recovery stories more upsetting than inspiring. This illness is stressful enough. I don't have the energy to go chasing after every possible treatment. And I don't want to feel as if my failure to recover is my fault. Until I see good, scientific evidence, I'll have trouble believing anything can cure or significantly improve the illness I have.
 

corinne

Member
I agree. For some reason I do not find recovery stories inspiring also. thank you for saying that.

After being ill for 26 years I have seen tooo many people who say they have ME/CFS but don't have what I have...not even close! And I have heard tooo many people say they had it and got themselves well by doing some minor thing that only made my husband become more skeptical of me....like what's wrong with me that I can't do that...and thus more alienated. That is what I call pressure and stress.

I too have been one who needs scientific support...maybe it's my science backround. I gave up chasing testimonial cures long ago!
 

Esther Siebert

New Member
There is another aspect to this issue that I experienced. When I first got ill in 1986, my doctor told me to go home and rest because it was viral (EBV) and there was nothing that could be done at that point. In a short while, I became bed bound so I had no choice anyway. After 2-3 years, I started getting incrementally better and could walk to the park close by and back and then go back to bed. Or go out to eat on rare occasions. Then I found I could shop for a couple of hours. During this time, I would hear accounts of what others did to get better which I really discounted because I had gotten better from bed rest. Even still I feel overwhelmed by accounts of using this supplement and that method. I don't feel competent to treat myself or understand all of the reasoning behind each suggested treatment. Only two things have given me a consistent improvement, Florinef and Xifaxan.
 
This is exactly my case, Cort, and I agree with what you are saying:

"...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..."

Absolutely!

I certainly do not regard my "improved" life with relief from much of the worst fibro symptoms, as "normal". There would be many jobs I would be completely unable to hold down, and there are many physical activities I could not participate in, that even ordinary people completely out of training could cope with, given a bit of recovery from normal levels of pain and stiffness afterwards. The time sacrifice and financial cost of managing my condition as I do would make life with a normal family very difficult.
 

tandrsc

Well-Known Member
I voted for "I don't believe recovery is possible" but that's only because I've been ill for decades and have watched myself slowly decline over the years.

I managed to make some significant headway a couple of years back (herbs + very strict pacing) and got back to work part-time, but then it all went horribly wrong and I'm having to give up work again.

I have a number of things in my ME/CFS toolkit that I believe will stop me from becoming bedridden, but I believe that recovery is beyond me.

I suspect that ME/CFS is a variety of illnesses, or at least variants of the same illness, and that some are more stubborn than others.

I see a lot of people with MS. Some are leading normal lives provided they keep up with the things that help them, whereas others are in wheelchairs barely able to move. The ones in wheelchairs must be asking themselves the same question we do, i.e. Why can those other sufferers lead normal lives when we've tried all the same things?
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
I get that but
I agree. For some reason I do not find recovery stories inspiring also. thank you for saying that.

After being ill for 26 years I have seen tooo many people who say they have ME/CFS but don't have what I have...not even close! And I have heard tooo many people say they had it and got themselves well by doing some minor thing that only made my husband become more skeptical of me....like what's wrong with me that I can't do that...and thus more alienated. That is what I call pressure and stress.

I too have been one who needs scientific support...maybe it's my science backround. I gave up chasing testimonial cures long ago!
I generally think that for most of the people who recovered - it took years and trips to different doctors and trying many different treatments - before they found something that worked. It wasn't an easy trip at all. Before I started doing the recovery stories program actually I rarely heard of cures.

On the other hand I think there must be lots of types of ME/CFS for which no cure is known...

I would keep my eye on testimonials, though. One might pop up that fits you. I would be surprised that if your cure comes - hopefully it will - you won't find out about it first from some sort of testimonial - either via doctor who says this worked for someone else - or from another patient - not from a study. A study would require testing a drug that fits what you have and a group of fellow patients who have what you have. At least right now we're quite a ways from an organized approach to ME/CFS that could produce something like that.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
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.

Otherwise there are a lot of different directions to go and that's obviously confusing, time consuming and expensive to try...It's a bit overwhelming - particularly for people who are already battling overwhelm in different areas.

Still they can provide clues that can help some people.
I believe it's possible to recover from ME/CFS, particularly in the early stages. However, I am skeptical of most recovery stories. Too many think they have ME/CFS when they don't. Too many doctors use it as a throwaway diagnosis for for people (mostly women) who complain about being tired. Plus, I think it's too easy for people to fool themselves into thinking they're better. There's a lot of pressure from family, friends and society to pretend you're healthier than you are.

Generally speaking, I find recovery stories more upsetting than inspiring. This illness is stressful enough. I don't have the energy to go chasing after every possible treatment. And I don't want to feel as if my failure to recover is my fault. Until I see good, scientific evidence, I'll have trouble believing anything can cure or significantly improve the illness I have.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
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.

Otherwise there are a lot of different directions to go and that's obviously confusing, time consuming and expensive to try...It's a bit overwhelming - particularly for people who are already battling overwhelm in different areas.

Still they can provide clues that can help some people.
 

julia cosgrove

New Member
In the UK you need around five or six points to qualify as cfs. As an M.E patient I have on and off around sixty odd symptoms. A prominent Dr in M.E found almost half of M.E patients sent to her for her research trials did not have ME. Now....if we are to assess whether people actually recover from M.E then shouldn't we have some form of testing to ascertain people actually recovered from M.E first? M.E is now thought to be auto immune. I myself have tested regularly Ana positive since age of 9.

So....theoretically in this case we shouldn't worry about people with lupus or any other auto immune illness cos they will recover....they don't need meds cos they can just pace right?

Almost half...ill repeat....Almost half of people checked did not have the illness and the table to include them is way too narrow. Now I'm not saying they didn't have cfs. Sure if you test four or five positive you are obviously ill. You could have some serious virus wiped you out and need time to get back on your feet.

When I hear people say it's the way I THINK I find it infuriating. I was a fit and healthy mum of three gym bunny hard working but took time to relax. As for Epstein Barr my rheumi told me around 90 percent of the population have it mostly in childhood.

I'm sick and I'm incredibly ill I've gone from 3yrs bed bound to being able to move around the house limited. I ain't interested in stupid diets and supplements cos the people I spoke to were all ill on them too.

Why do some people recover? We will find out the percentage of recoveries once a clear testing for the illness is in place. Excersize is incredibly dangerous for people with M.E....Maybe it's not for people with cfs.
 
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Katie

Active Member
I do believe some people with ME, ME/CFS or FM or whatever do recover. It may be a very long remission and not a true recovery and may re-occur in a few years even, who knows. People with cancer, with MS etc do go into remissions and these may last a long time, do we doubt they had cancer or MS-no because there are lab reports etc to back it up.
I haven't completely stuck to my no gluten, no sugar, no caffeine, no alcohol, no chocolate, no nothing diet this summer and I have paid the price with increased exhaustion and pain.
As many others I have tried almost every possible treatment and I'm still sick. Through strict pacing, diet and relaxation meditation I manage to get through the day. I've been on valcyte x 4 months now and not a lot of improvement-just a lot of stomach issues.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
This is exactly my case, Cort, and I agree with what you are saying:

"...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..."

Absolutely!

I certainly do not regard my "improved" life with relief from much of the worst fibro symptoms, as "normal". There would be many jobs I would be completely unable to hold down, and there are many physical activities I could not participate in, that even ordinary people completely out of training could cope with, given a bit of recovery from normal levels of pain and stiffness afterwards. The time sacrifice and financial cost of managing my condition as I do would make life with a normal family very difficult.
Not a recovery but improved. Which is better than not improved - but there is still a long way to go...
 
Thank you so much for the article , Dan Neuffer. I am very excited for you in your recovery.:) I would not ask you or anyone to prove their diagnosis was or was not M.E./ CFS after living with the stigma of this invisible illness for decades. And I do believe in healing miracles. The latter, in my opinion, is the only way anyone with m.e./cfidds for decade/s ++ can ever fully recover from it. Remission is a better chance. Similar to Karena and Corrine, I am skeptical of recovery stories. Happy for those that truly believe they had m.e/cfids/fm and recovered, but I would need stringent measurable controls and data to convince me that we were comparing apples to apples.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I think it's clear that the reality is that for a significant number of people their recovery plan a) has not been developed yet or b) is simply not possible with the medications we have. On the other one of the nice things about the internet is that we have access to a wide variety of people who are trying many different things.

When the big treatment that works for a significant amount of people is found I imagine that it will show up first a one person touting it. Skepticism will reign but a few people will try it - and it will be very helpful and the word will slowly spread. It may take years depending on how willing and effective those first couple of people are at sharing their story. There may be people out there who have an answer which could help many other people - but they got well and they just went on - and never communicated it....

In any case I imagine that the answer or answers could even show up an nonsensical at first but they will probably show up either in one persons doctors office or on the internet in a site like this. The hard part. of course, is figuring out what is real and what is not...
I do believe some people with ME, ME/CFS or FM or whatever do recover. It may be a very long remission and not a true recovery and may re-occur in a few years even, who knows. People with cancer, with MS etc do go into remissions and these may last a long time, do we doubt they had cancer or MS-no because there are lab reports etc to back it up.
I haven't completely stuck to my no gluten, no sugar, no caffeine, no alcohol, no chocolate, no nothing diet this summer and I have paid the price with increased exhaustion and pain.
As many others I have tried almost every possible treatment and I'm still sick. Through strict pacing, diet and relaxation meditation I manage to get through the day. I've been on valcyte x 4 months now and not a lot of improvement-just a lot of stomach issues.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I agree! What we really need more is more data: what lab tests did these patients have, what exactly were their symptoms? Unfortunately the really illuminating lab tests probably haven't been developed yet - darn it:mad:....Why we need so much more research - so we can finally uncover the subsets and determine which recovery stories; i.e. which protocols work for different groups.

There are clearly a couple of diet groups in ME/CFS and FM - people for whom diet is VERY important; it may be a small subset of patients but that's still a lot of patients. There's a antiviral group. There's probably a mind/body group. Ultimately we should be able to identify who fits in what group.
Thank you so much for the article , Dan Neuffer. I am very excited for you in your recovery.:) I would not ask you or anyone to prove their diagnosis was or was not M.E./ CFS after living with the stigma of this invisible illness for decades. And I do believe in healing miracles. The latter, in my opinion, is the only way anyone with m.e./cfidds for decade/s ++ can ever fully recover from it. Remission is a better chance. Similar to Karena and Corrine, I am skeptical of recovery stories. Happy for those that truly believe they had m.e/cfids/fm and recovered, but I would need stringent measurable controls and data to convince me that we were comparing apples to apples.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
"
In the UK you need around five or six points to qualify as cfs. As an M.E patient I have on and off around sixty odd symptoms. A prominent Dr in M.E found almost half of M.E patients sent to her for her research trials did not have ME. Now....if we are to assess whether people actually recover from M.E then shouldn't we have some form of testing to ascertain people actually recovered from M.E first? M.E is now thought to be auto immune. I myself have tested regularly Ana positive since age of 9.

So....theoretically in this case we shouldn't worry about people with lupus or any other auto immune illness cos they will recover....they don't need meds cos they can just pace right?

Almost half...ill repeat....Almost half of people checked did not have the illness and the table to include them is way too narrow. Now I'm not saying they didn't have cfs. Sure if you test four or five positive you are obviously ill. You could have some serious virus wiped you out and need time to get back on your feet.

When I hear people say it's the way I THINK I find it infuriating. I was a fit and healthy mum of three gym bunny hard working but took time to relax. As for Epstein Barr my rheumi told me around 90 percent of the population have it mostly in childhood.

I'm sick and I'm incredibly ill I've gone from 3yrs bed bound to being able to move around the house limited. I ain't interested in stupid diets and supplements cos the people I spoke to were all ill on them too.

Why do some people recover? We will find out the percentage of recoveries once a clear testing for the illness is in place. Excersize is incredibly dangerous for people with M.E....Maybe it's not for people with cfs.
We will find out the percentage of recoveries once a clear testing for the illness is in place" -agreed! That comes first doesn't it? Because otherwise you're likely saying someone who has "X" recovered when they actually had "Y". Now that Ron Davis is starting his incredibly comprehensive study of the severely ill we need incredibly comprehensive studies of the less severely ill. Anyone got $10 million dollars?

Whenever someone says diets don't mean much I always think of Dorothy Walls and MS....and this guy with MS - http://www.cortjohnson.org/forums/threads/from-multiple-sclerosis-to-climbing-mountains-diet-makes-the-difference.3007/

These are the kinds of things that kind of haunt me actually....
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
"
In the UK you need around five or six points to qualify as cfs. As an M.E patient I have on and off around sixty odd symptoms. A prominent Dr in M.E found almost half of M.E patients sent to her for her research trials did not have ME. Now....if we are to assess whether people actually recover from M.E then shouldn't we have some form of testing to ascertain people actually recovered from M.E first? M.E is now thought to be auto immune. I myself have tested regularly Ana positive since age of 9.

So....theoretically in this case we shouldn't worry about people with lupus or any other auto immune illness cos they will recover....they don't need meds cos they can just pace right?

Almost half...ill repeat....Almost half of people checked did not have the illness and the table to include them is way too narrow. Now I'm not saying they didn't have cfs. Sure if you test four or five positive you are obviously ill. You could have some serious virus wiped you out and need time to get back on your feet.

When I hear people say it's the way I THINK I find it infuriating. I was a fit and healthy mum of three gym bunny hard working but took time to relax. As for Epstein Barr my rheumi told me around 90 percent of the population have it mostly in childhood.

I'm sick and I'm incredibly ill I've gone from 3yrs bed bound to being able to move around the house limited. I ain't interested in stupid diets and supplements cos the people I spoke to were all ill on them too.

Why do some people recover? We will find out the percentage of recoveries once a clear testing for the illness is in place. Excersize is incredibly dangerous for people with M.E....Maybe it's not for people with cfs.
We will find out the percentage of recoveries once a clear testing for the illness is in place" -agreed! That comes first doesn't it? Because otherwise you're likely saying someone who has "X" recovered when they actually had "Y". Now that Ron Davis is starting his incredibly comprehensive study of the severely ill we need incredibly comprehensive studies of the less severely ill. Anyone got $10 million dollars?

Whenever someone says diets don't mean much I always think of Dorothy Walls and MS....and this guy with MS - http://www.cortjohnson.org/forums/threads/from-multiple-sclerosis-to-climbing-mountains-diet-makes-the-difference.3007/

These are the kinds of things that kind of haunt me actually....
 

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