Dan Neuffer had a severe case of ME/CFS, but after extensively researching the illness, Dan came up with his own protocol and eventually fully recovered. Since then Dan has produced a website, and a book, and offers a coaching program that seeks to assist others to find their own pathway to recovery.
Dan’s blogs tend to be thought-provoking and provocative and this one is no exception. Dan proposes that having a more positive prognosis; i.e. understanding that recovery is possible, could aid in each person’s efforts to recover from this disease.
If you are like most people who have experienced ME/CFS, Fibromyalgia, POTS or a similar syndrome, there is a real sense of relief when you finally receive a diagnosis. At least you know what you have now, rather than being labelled a hypochondriac, having a mystery illness or a having half a dozen different diagnoses.
A Basis For ME/CFS/FM/POTS Prognosis
So once you know what you have, the very next question is; Now what? When will I get well again?
The answer you will get will greatly depend on whom you speak to: different doctors will give you vastly different prognoses. Different patients will also give you different answers based on their experience, which often leads them to identify themselves within a certain subset.
But is it really helpful to do that? Does it really change the prognosis?
A disease prognosis is ideally based on statistical analyses (studies) of a more or less homogeneous disease population receiving a standardized treatment.
So for example, if we look at an illness like Addison’s disease, the root cause of the problem can be clearly identified and diagnosed and a fairly standardized treatment applies. Data can then be easily collected on a large sample of people experiencing the illness to create a somewhat meaningful statistic. Even within the disease, gender, race, age, severity of the illness, the presence of comorbid illnesses, etc. can all impact prognosis, but the point is that these factors can be statistically analyzed.
Determining a prognosis gets much more complicated when we are facing illnesses like fibromyalgia, ME/CFS, POTS, MCS, Lyme Disease, migraine, IBS, EDS (EDS or EHS?) and the like, which tend to occur together. How to determine, for instance, a prognosis for people with:
- ME/CFS, IBS and FM, or
- FM and POTS, or
- ME/CFS, migraine and POTS?
Further subgroups can be identified based on viral reactivation, allergies, food sensitivities, other forms of orthostatic intolerance, etc. – none of which have been studied comprehensively enough in these syndromes to understand their effects on prognosis.
But That’s Not The Worst of It!
Because it is still not widely agreed upon how the illness works, the treatment approaches are far from standardized. In fact, with the huge range of dysfunctions experienced, the treatments offered are often completely different.
Some doctors might recommend somebody take thyroid medication because their thyroid hormone is low – another might recommend hydrocortisone instead because of low cortisol levels.
One integrative doctor or naturopath might recommend a particular diet and range of supplements to address gut function, whilst another patient might not have any gut issues. And of course, you’ll probably find that any two patients experiencing gut symptoms, might have different issues ranging from gut dysbiosis to candida or parasite infections – so different treatments are warranted. Even if the issues are the same, will these be accurately identified? – and if so, will any two treatments be the same?
Of course, we are only scratching the surface of the variation in treatments that people have, or do not have.
So What’s The Prognosis For CFS/Fibromyalgia/POTS/MCS
If no accurate statistics exist regarding the effectiveness of most of the treatments in ME/CFS/FM/POTS/MCS then how is any prognosis ever derived?
Clearly, the prognosis you get is based on the experiences of the doctor you’re seeing.
The first hurdle is whether your doctor thinks the illness is real. Some doctors still think it’s depression, or they might think it’s a whole bunch of different illnesses producing the range of symptoms. A lot really has to do with their personal experience.
If he or she has not had much experience with this illness, then the prognosis may not be much more meaningful than whatever you find on the internet.
However, if they have had negative experiences then you can probably expect a negative prognosis; i.e. “it’s a life-long condition that we can try to manage as best as possible”
On the other hand, if they have had positive experiences, you may hear “it will probably last a year or two before you recover”.
I have heard people tell me a huge variety of prognoses from their doctor.
What was your experience? (please comment below)
Given the huge variety of prognoses offered, the huge variation in the symptoms, triggers and comorbidities, I would suggest that most treatment outcome statistics are probably not particularly meaningful, making most prognoses not that meaningful either.
But then how to form any kind of expectation about our health in the future?
How Do We Form Our Own Outlook?
Without a doubt, a firm prognosis from the doctor is likely to impact our outlook for recovery. But in my opinion, it is our own experience that really tends to give us more conviction than anything else.
When I first got sick, I originally assumed I would just get better. But as weeks turned into months, the fear that this would not go away started to creep in.
Before I was actually diagnosed correctly, I was given all kinds of different diagnosis and treatment options. Everything from having glandular fever (mono), to having an infection such as candida, parasites or some sort of unidentified virus.
For most of these things, the answer was a treatment or a little time to get over it, so I was pro-actively trying any treatment option available to me.
Over time, I became dubious about any diagnosis and prognosis. Okay, dubious is perhaps not the right word, let’s face it, I became EXTREMELY sceptical. I was so jaded with years of wasting money and going through hope and disappointment that eventually I placed zero value on any prognoses I received.
Whenever things got drastically worse, though, (often just when I thought it wasn’t possible for it to get any worse), I inevitably ended up in front of another doctor.
By the time I was diagnosed with ME/CFS and given a prognosis, (which was positive – I was assured that I could be treated and become well again), I had already lost all hope because I felt I had tried ‘everything’ without success.
When, despite the positive prognosis, the extensive treatments again didn’t lead to recovery, I placed no value in any further prognosis after that. It simply firmed up my view that recovery was never going to happen for me. Everything I read on the internet confirmed that viewpoint!
I had never heard of anyone recovering, only vague second-hand stories related to some treatments which I had already tried without success (there was a long list of these). Clearly they didn’t have whatever I had! (or at least that’s what I thought).
Perhaps your journey was similar to mine. You try everything you can find, you are promised many positive things without results, and in the end you resign yourself to it being a life-long condition that you try to manage as best you can. In a way, you form your own prognosis.
However, some years later I hit my ultimate low point and started my own research about the illness. When I finally managed to recover from 7 years of illness, my whole outlook changed.
What I found interesting is that when I started my recovery journey after piecing together my explanation for this syndrome, I was very confident that theoretically speaking, recovery was possible. However, it wasn’t until I had recovered and had enjoyed wellness for some time, that my outlook for recovery from this syndrome actually changed.
Since then, I have seen many more recoveries, which of course has firmed up that view that recovery is possible.
But Why Does a Prognosis Even Matter?
But does a prognosis, positive or negative, matter? Does it have any real impact on your well-being or actual likelihood of recovery? I am curious to hear what you think – but my feeling is that the prognosis you get can have an enormous impact on your likelihood of recovery.
It’s clear to me now that if I had genuinely thought that recovery from the illness was possible instead of my resigning myself to being ill for the rest of my life at one point, I would have continued to seek help.
Because I thought I had already tried ‘everything’ and because nothing had worked, I frankly had run out of energy. Not just physical energy (which, of course, was in short supply whilst ill), but also emotional energy.
Obviously, once we resign ourselves to our experiences; i.e. resign ourselves to a negative prognosis, then unless some spontaneous miracle remission occurs, it’s not likely anything will change.
This is why I think that having a positive outlook regarding one’s prognosis is really important – so long as it comes with some kind of practical action steps.
Personally, if I had known of people who recovered, people that genuinely had experienced the same illness, the same range of severe symptoms, then perhaps I would not have lost hope and given up all those years ago.
Even when I finally tried again and succeeded with my recovery, if I had known of others who had done this successfully, my journey would have been much easier. Because whenever I had a set-back during my recovery, my confidence that I was getting anywhere was completely shattered. It was only towards the end of my recovery journey that I learned of other recoveries, which was a great comfort and confidence booster.
Having a positive reference to someone else who has experienced the same difficulties but manages to get their health back, makes all the difference. It gives you hope, which can inspire new action steps leading to new possibilities.
The Key Takeaway: Recovery Is Possible!
Anyone who has been ill for some time recognizes the huge amount of uncertainty around the prognoses for ME/CFS/Fibromyalgia/POTS/MCS/EHS.
Perhaps rather than seeking certainty about the outcome and possibly accepting a negative outlook or negative prognosis, a better approach is to recognize the uncertainty and use it in a positive way.
Yes, many people don’t recover and are sick for long periods of time, but everyone has a different experience and a different way of managing the illness and trying to recover.
During my 7 years of illness, I never met anyone who had the illness or that had recovered from it (yes, I was living in a cave of sorts). But as my recovery was progressing, I was surprised to meets lots of people who also had the illness. It was almost as though they had been there all the time but I just never saw them.
The same thing happened after I recovered. Suddenly I met people who had been ill and recovered their health. I wondered; where were these people while I was sick?
I learned that most people who recover don’t like to talk about the time they were sick – they just want to get on with their lives. This is especially the case when they don’t really know how they recovered. This uncertainty leaves them with a fear of a remission, making the whole topic even more taboo. Many people are also very private about their experiences, only sharing them with those closest to them because sadly, there is still somewhat of a stigma attached to the illness.
I have also found that lots of people who clearly had the illness never received a diagnosis – especially if they fell sick a long time ago, even though they clearly had the illness. Sometimes they were given other labels like chronic Epstein Barr or a number of endocrine dysfunction diagnoses.
While some shy away from anything having to do with the illness, some become quite passionate about helping others with health, becoming naturopaths, dieticians, yoga instructors, etc. Even if they don’t go down that road professionally, they often become very enthusiastic about good health and their lifestyle.
Because I feel it would have been so helpful to know of others’ recovery journeys, I decided to share people’s recovery journeys in interviews on my website. There are also stories on Health Rising and other places on the internet. But if you look for some of these key signs when you meet people, perhaps you can meet more people that have recovered also.
Since my recovery, I have met and learned of hundreds of recovered people. People of all ages, many of whom have been ill for many years (even decades), been very severely ill, even bed-bound and still recovered. And by recovered, I mean fully well, living full productive lives, working, exercising and living normal lives again without relapsing ever again (I have spoken to many people who have been recovered for decades).
My favourite way of sharing these recovery stories is by interview, so you can hear their voice, their journey, their struggles and their elation at getting their lives back.
I hope you regain hope and direction by recognizing that recovery from ME/CFS/Fibromyalgia/POTS/MCS is possible.
Dan Neuffer’s story with chronic fatigue syndrome (ME/CFS) / fibromyalgia began with an abrupt onset triggered by a vaccination. His symptoms ranged from extreme fatigue not alleviated by rest, bouts of fever and other flu-like symptoms, gastrointestinal symptoms as well as night sweats, cardiac symptoms, orthostatic hypotension, allodynia, excessive urination at night, salt cravings, pain and neurological symptoms such as fibro fog.
After fruitlessly seeing dozens of doctors, Dan took matters into his own hands and found a pathway to recovery. He believes that autonomic nervous system dysregulation plays a fundamental role in these illnesses and that a comprehensive treatment approach is critical; when he found the right treatment protocol, treatments that hadn’t worked for him before began to work.
Check out Dan’s Health Rising Blogs
Share your pain, make friends, find new treatment options, check out recovery stories and more in the Health Rising ME/CFS, FM and Chronic Pain Forums here