The Recovery Question, by Dan Neuffer in Health Rising Forum, Sep 17 2015

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.
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.

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.

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.

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

Action for ME asks Can and do people recover? part 1

Can and do people recover part 2

Medical and scientific views on recovery