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.
The many co-morbidities in ME/CFS/FM/POTS complicate getting a good prognosis
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.
Forming accurate expectations regarding one’s future health can be difficult
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.
After trying and failing many times hope for recovery or even progress can fade
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.
Some people, perhaps more than we think, do fully recover from ME/CFS/FM/POTS. Does knowing that help?
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
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.
Since Dan recovered he has written two books, CFS Unravelled and Discover Hope and created an online recovery program for ME/CFS/Fibromyalgia called ANS REWIRE
Check out Dan’s Health Rising Blogs
I find that those selling something purported to help with recovery are much more likely to present the viewpoint that recovery is possible, of course. I do not trust someone with anything to sell.
Furthermore, if I became well again and was able to be employed, I would be thrilled to offer what worked for me at no cost to patients who still suffered.
nancy, I also do not trust people who want to make money about their recovery. And if I was recovered, or only better and not getting worse and worse, I would shout it free from the roof for other patients.
I would be interested to read your academic publications please Dan and the research evidence that supports your treatment approach?
Have you collaborated with the wider scientific and academic community , to share your knowledge and insights and contribute to the global understanding of ME?
I myself am very wary of those who claim to offer recovery at a price to desperate and vulnerable patients ; but no doubt that outlook will influence my prognosis?
Hi Ruth,
I am not an academic nor funded by a University – so no academic publications exist at this time. My primary effort was to publish the book. However, there are many many academic publications on the relevance of the ANS in the pathogenesis of the illness – you can simply Scholar Google these.
I don’t ‘offer recovery’, I offer help. I would welcome collaborating with anyone that has funding available to do a research study on the program. It is not within my means or expertise to do such a study on my own.
I share your waryness about anyone offering miracle cures – and yes, in an ideal world everything would be funded through government health care – sadly that is not the case.
You know, I hear that a lot. This idea that people should give away medical care for free.
Would you REALLY do that? Really? Where would you get the money to pay your clinics light bills? Where would the money come from to feed your kids? Would the be able to go to college?
Itd be great if society supported free medical care by rewarding the folks that helped with free insurance, housing, etc… But they don’t.
I don’t know why very one seems to think that doctors or really anyone should give things away for free when having no income simply isn’t feasible. It’s a pretty selfish attitude if you ask me.
Thanks for the comment. I am always baffled by this topic – like people think you recover from the illness and gain some special expertise and automatically become financially independent and don’t have to work and earn an income to get by. It seems like such a bizarre thing to even have to have the conversation!
Two thoughts:
I don’t think what Dan is offering here should be described as medical treatment (as it was by anonymous).
I’m wondering how Dan funded all the things that he tried.
Hi Kelly
I guess I funded it like most of us, not easily.
Frankly, I couldn’t afford the many treatments I tried over the years, which made it all the more frustrating when they didn’t work. Probably part of the reason why I stopped trying – it wasn’t just the continued disappointment, but also that I felt I was wasting money that I didn’t have.
Hi Dan
Thank you for your comment. However you didn’t anyswer my question. I’ve been thinking about the circumstances of both myself and others which prompted the question, in the first place. Some people are more privileged than others in life in general, and I believe that such privilege has a massive impact on how much a person with a chronic illness has to fight for the very basics of health care and day to day living. I’m not saying those who are worse off should give up, but if you are talking from a position of privilege, then it might explain (at least in part) your viewpoint regarding positivity having an impact on recovery. The more privilege a person has, the more resources they have at their disposal and the easier it is to adopt a more positive outlook.
Hi Kelly
Affording any treatments wasn’t easy. I was earning some income much of the time (when I could work part-time) and when that wasn’t enough, savings were used up. So I don’t come from a ‘life of privilege’. In any case, the treatments I tried over the years didn’t help until I made my final push into recovery.
Also, my outlook wasn’t positive – it was morbidly negative! (hence my motivation for writing the blog)
Looking at many of the comments I think we might be overthinking this – I think Cort summarised it in the best way https://www.healthrising.org/blog/2017/10/12/prognosis-cfs-fibromyalgia-pots/#comment-767184
The only way to really effectively spread the news of a cure if one ever comes about is to charge for it. Only then would anyone have the time and resources to spread the news to the most people as possible.
While it is indisputable that having a positive attitude *influences* health outcomes, it is facile and cruel to suggest that optimism qua optimism can facilitate recovery.
Some people DO recover (or nearly recover). As someone who has led 3 “in person” support groups, I have seen it happen.
In my experience and to my knowledge, MOST people with ME recover to some or even to a great, extent, but remain disabled (in the sense of not being able to be gainfully employed).
There is also a substantial proportion of people with ME who recover only VERY slowly and not to any great extent.
There are also those who get worse (usually due to suffering another insult to their health, but in a small number of cases for no apparent reason).
I am probably not the only one who bristles at the suggestion that a positive prognosis could have such a strong influence on recovery from ME.
I don’t want to repeat myself ad nauseum but I must reiterate that a more positive prognosis is likely to make recovery from most varieties of illness more likely.
Conversely, there are people (e.g., Stephen Hawking) who are given terrible prognoses and, for whatever reasons, defy the odds.
It IS possible for some people, under some circumstances, to recover (at least substantially) from ME.
But I would urge people not to contribute further pain to those of us who work damn hard to recover and who, if lucky enough to do so, spend literal fortunes (and who know it is often possible to recover from ME) but remain very ill.
Thanks for your comment Stephanie – not sure if you misunderstood me – I am not saying that there is a magic power with a more positive prognosis and being optimistic. I think jumping to “facile and cruel” seems pretty harsh.
What I am suggesting though is that most prognosis – good or bad, don’t really appear to have a good basis for them.
And I stick to my viewpoint, that when people get a very bad prognosis, they are less likely to do anything to help themselves – after all, what’s the point.
I would be surprised to find anyone disagree with that.
It just makes sense to me that if you feel you have a good chance of getting better – if you feel that a future of health is beckoning to you – then you’re more likely to take the steps to achieve it.
If you don’t believe recovery is possible then you’re less likely to…why would you spend time and resources chasing something you don’t believe would happen.
On the other hand, if you really believed it could happen you would leave no stone unturned. I think there are lots of people who have left no stone unturned and have not been successful. I don’t think there is a cure for everyone out there. That doesn’t mean, though, that having positive view of the future won’t help some people.
Yup
If you dont trust anyone with something to sell then how are you ever going to make any progress?
Hi cort,
I am severelly ill for decades and went worse and worse. tried also many things. But maybe the wrong ones. May I ask you how you recovered? what your protocol was? And if you where severely bedridden and homebound?
Hi
It was me Dan who recovered and wrote the blog.
People ask me this all the time, but it’s not something I focus on because the old “just do what I did” doesn’t quite work for this illness! However, if you really want to read about it, you can check out my recovery story on my site here:
https://cfsunravelled.com/dan-neuffers-cfs-recovery-story/
Yes I was homebound and als bed-bound at times and have seen many other people recover that have been ill like that.
I disagree. In fact for me the prognosis part helps validate the realty I live with everyday. I think this illness needs to be taken seriously and viewed independently. I’m sure there is someone out there who would like a better prognosis, but for most of us this can hurt more than help. You have to adapt yourself around the constraints of the illness. I am very pleased that Dan got better through his own personal experiment, that is great but I have a problem with people who think because I did this,you can too. We are all different. The fact is the prognosis is a helpful barometer of sorts. It is real, and needs to be shown as such. Just my personal opinion, but good for Dan that he found his own cure…we can try his methods, but he shouldn’t be working on changing statistics (my opinion)
Thanks for your positive comment Jessica.
Well, it’s interesting because even though you are at the other end of the spectrum in your opinion compared to me – I kind of agree with you.
Nothing with this illness is really simple is it? First of all, regardless of the prognosis, I think it is absolutely essential that the illness is recognised as being severe and REAL! So in now way should a prognosis marginalise us – “it’s no big deal – you’ll be better shortly”. In any case, I think that would be pretty misleading for the vast majority of people with genuine ME/CFS/Fibro/POTS!
I also totally agree with you in that we are all different. Whilst I feel very strongly, that we all have experience with the same illness and that there is a single root cause, the secondary dysfunctions and the way the illness is triggered varies hugely between people. That’s why what you say is 100% correct – what works for one person often won’t work for the next (more than often actually).
This is why I advocate a tailored approach to recovery – rather than the “this worked for me, so you too can cure yourself”. Anyone with any real experience with this illness recognises that this just doesn’t cut it – which is why I don’t even like answering the question of “how did you get well” – it’s not THAT relevant – what’s relevant is WHY did you get well.
PS: It would be great to ‘change’ statistics for the positive, but the first step is getting more accurate ones, something I think we are a long way off for reasons mentioned in the article.
Dan,
Thank you for your considerate response. I don’t really know, Maybe changing prognosis could be helpful. There is alot of false hope and pie in the sky thinking with this illness though. I get wary because I personally have had so many tidbits of helpful(NOT!) advice given to me over the years by the medical establishment and just as importantly friends and family. I think because the illness is so poorly misunderstood it sets up the (victim) of the illness to continuously fail in an attempt to regain their pre-illness life. For me it basically imploded my life. It’s like watching helplessly as everything you care about is being destroyed or taken from you, and the more you try, the worse things get. I don’t mean to sound negative or fatalistic here, but the reality is :people who don’t have the illness generally do not understand at all what you are going through. The best you can hope for is kindness. A lot of marriages don’t survive it, the spouse can’t deal with it (or worse, thinks you are lazy and doesn’t believe you….that was my marriage…i got ill and he was horrible about it and I feel that there must be more validation to back us up…the marriages might fail, the life might implode ,but it helps to see that the illness is taken seriously and not belittled…It seems like if you give an inch, people will automatically take a mile and assume you have nothing more serious than a little cold ,or you are depressed and if you just were a little more happy ,positive and determined you would get better…when I can manage to live like I’m “o.k.’ and do something beyond my limits, I always,ALWAYS crash, and I feel that if I had heeded my body’s warnings early on, and not kept trying to please people and live up to my former self, I would be in a much better place now health-wise. It is good to try to be positive but it is a very thin line between that and delusion. I have lost soooo much due to this illness(like so many) and have finally come to a place where I can accept the limits a little better and for me ,at least,it seems like a saner approach than trying to get well…get the mind well, and then work very slowly on gaining as much health as you can ‘within’ your limits, which almost never means regaining your previous healthy state, but rather working with what you have. More power to you Dan.I’m happy to hear you found a way back. Personally I like Toni Bernard’s approach…a Buddhist philosophy. Her book “How to be sick” has saved my sanity from peoples hurtful comments and expectations and my own disappointments at not being able to go back in time to the previous me. I think for most of us this is the best path,acceptance and making lemonade out of lemons.I agree the first step is getting more accurate data and statistics…things need to be done in such a way that the patient community feels there is a real understanding in the medical establishment, if there is respect there, then and only then ,(no matter what studies come out, no matter how good they are) Until we get the medical professionals trained in treating us,knowledgeable aboout our illnes, until then, the prognosis should remain as is, as it verifys the suffering felt by so many who feel so abandoned and hopeless. On a positive note, I do think its amazing, your recovery story. Good for you!
Hi Jessica,
Well, I don’t think you sound “negative or fatalistic here” – it’s just realistic isn’t it when you have had your hopes crushed over and over again.
You know, I totally get that because of course I have been there. I am not sure if people can see the duality of my responses – on the one hand I say, be positive, seek a good prognosis – the next breath; totally understand avoiding a positive prognosis! That’s my personal experience coming through.
But if I had to summarise my feelings and responses to the comments in this blog it would be this:
RECOVERY IS POSSIBLE! (NOT GUARANTEED)
YOU CAN CHOOSE YOUR OUTLOOK THAT SERVES YOU BEST!
Absolutely agree – unless you have had the illness, you can’t begin to understand what it’s like.
We all want better recovery outcomes, but for goodness sake, we must at least have some respect and not be belittled having it suggested it’s all in our heads!
Love your comment about the fine line of being positive and delusional – during my own recovery I actually thought I was flip-flopping between those a few times – and I have to tell you – IT WAS VERY UNPLEASANT, to say the least.
To finish my response, I note you saying “the prognosis should remain as” – my point in the article is that this fixed point doesn’t exist. There is no firm prognosis in my mind – people tell me how they get given prognosis across the full range of likely outcomes, like I said, often determined by the individual doctor’s experience and education.
Thanks for your positive comment J.L. – I get where you are coming from. 🙂
I would be very careful about the word recovery. Remission is a better word. I was disabled for a year in my early twenties, and then gradually got better and better. I could argue that a fast food diet helped me recover (of course it did not), because that is what I was eating during my first 5 years of continued recovery. although I continued to have vague symptoms, i was fully functional. I always thought I would get better. Many things seemed to help including acupuncture, IV’s, etc. However after a stressful business period, and maybe a flu shot, I collapsed out of the blue and have not recovered since. So 19 years of fully functional and now 8 years of disability. I continue to believe, but as age and disease intersect, it’s getting tougher.
Hi Scott
Now of course your comment and point of view are absolutely reasonable and I would also say totally logical and intelligent!
However, I also totally disagree – isn’t that surprising! 🙂 The reason for that is personal experience and point of view.
MY comment would be “be very careful about the word remission. Recovery is a better word.” I say this because remission is such a negative word, as it strongly suggests that a relapse will happen. Now that may be true for some, but it’s not always about being 100% accurate, but also about how it makes us feel!
For instances, you will usually see me use the word ‘illness’, whilst others use the more accurate word ‘disease’. But ‘disease’ is such a negative word, it makes me feel awful to hear it and I have recovered longer now than I was ill. (reached that milestone recently).
I see people that have experienced ‘remissions and relapses’ just like you have all the time. So I totally understand how heart-breaking it is and always admire how you seek to stay positive (in a balanced and protective way) ? However, your experience is what I would describe as an ‘accidental’ recovery, because you didn’t fully understand why you got ill or why you got well. This is why I think education on how the illness works is so important because I feel these accidental recoveries are much more likely to lead to a relapse.
So I noted you using the words “I collapsed out of the blue” – but I don’t think it was out of the blue at all – your experience is totally understandable and the physical and psychological triggers you experienced are typical for sparking a relapse or the illness in the first place.
I hope you find your way back to being recovered and get to experience a more robust recovery the next time around – thank you for your very pertinent comment.
I believed with the right circumstances I could “get well” from fibromyliga because I could not face the fact that at age 57,after returning to school to earn the credentials to do my dream job, I would never do it. And I did the physical therapy and adjusted my diet and kept my spirits up until my doctor told me my heart was failing. But with the placement of an ICD it seemed that not only was the heart problem improved but my entire physical being was improved. And that lasted until the diagnosis of a genetic form of leukemia which is treatable but the treatment seems to be worse than the illness. And now even though the cancer has been slowed down the medication I must have to keep it at bay has caused serious damage to my kidneys resulting in the necessity of dialysis for an indeterminate period of time. So do I believe in recovery? Not anymore.
Jessica, I completely agree with you. I think the best approach is to acknowledge that we can do a lot to manage the symptoms and we can massively improve any mental health issues that we have developed as a result of this horrible situation we are in. I think these things can make a huge difference. I don’t think it is helpful to refer to them as a cure however.
I totally bought in to the psychology side of things, thinking that if I could ‘re-wire my brain’ I would be healed. Mentally and emotionally, I definitely still benefit from the things I learned through doing this and don’t regret it at all. Physically, I am worse.
I think that first of all we need the validation of recognising this is a ‘real’ physical illness. Then, we can put into practice all of the positive psychology strategies that can help us to live well with it.
A realistic positive prognosis for me is: ‘You have this illness. You can still live well with this illness. It is likely that you will see some improvements over time.’
Tia,
You took the words right out of my mouth.lol I couldn’t agree more. Its a shame you got worse physically but yes, some of the psychological and or meditative/positive thinking (within the limits though!) can be helpfull, but are by no means a “cure”. I think we have some great researchers out there who are true scientists that are going to come up with even more information on this disease…I feel hopefully optimistic that they are closing in on me/cfs secrets.There will be subsets (i think there already are) which will help explain some of our differences.I think there are some useful tools to glean from people such a Dan, but for most of us it is just that, tools, not a “cure” per say…
Jessica, thank you for replying. I am really happy to hear that we are on the same page. Your comments are so sensible!
There is this idea in the article above, and in other similar claims, that the only way that we can be positive about our lives is to believe in a ‘cure’. The truth is that there IS a way to be positive whilst also being realistic about this disease. It’s not an ‘either/or’ choice between all doom and depression OR unwavering belief in complete recovery.
It might be my Buddhist background (!) but I want to take the ‘middle way’ here and say that it is possible to be sick with this illness and to still believe that your life is valuable and worth living. It is possible to look realistically at the disease and to accept it and yet still want to make improvements so that we can live well with it.
I for one don’t need to believe in a ‘cure’/’recovery’ to have the self-worth necessary to make positive life changes thank you very much! Glad I’m not the only one 🙂
Hi Tia,
It seems hard to argue with what you are saying – I think that’s a really good point!
I didn’t mean in any way to imply that we can only be positive about our lives if we experience a recovery. My focus was more that if we think it isn’t possible, we are likely not to take actions towards achieving that goal – that certainly was my personal experience.
So not to take away anything from the value of the middle ground that you describe, but I have to say that for many people, actually reaching that middle ground and ‘making peace’ with the symptoms and the illness is often very powerful to help them move forward with recovery also.
What I am talking about here is acceptance, not resignation. This acceptance and mindful observation without judgement is really powerful because it allows us to retain our energy for worthwhile objectives, like enjoying life (and seeking recovery) as opposed to squandering it ‘fighting’ the experience.
There is much wisdom in your comments! ?
I agree but what works for one doesn’t always work for others. The positive thinking was great for me because my husband & others were destroying my hope over something they new zero about. It was very cruel. I was lucky to find a great Dr & I had amazing support from a few people but the ones constantly telling me what I should do or telling me I needed to sleep when why who any sane person not sleep if they could! I was cranky when I didn’t sleep? Really I believe most people are cranky when they overly tired but add in constant pain you bet I was cranky! Now I’ve got total control & don’t need or care to be with people who tell me what I should be doing! There is peace when you finally get to the point of not feeling defensive 24/7. My improvements are my prize. Also i had to take control over my life to save it. My story at one time made me feel so depressed until some traumatic events with a chronic alcoholic that I finally took my life back.
I agree! With you & also agree that if I had not been told by the very cold rheumatologist when I asked what the next step was & she replied LEARN TO LIVE WITH IT, would have not been so devastating. My best year still remembers how happy I was to get a diagnosis. Where I live health care is very limited so I wasted tons of money on useless supplements that I was told would cure this strange fibromyalgia. People had tons of junk to sell & there were tons people who were experts on FM who knew less than I did. My PCP told me to join a support group there were 100’s of them, took me 2 years to find they only 1 in my area which was at least 60 miles away. It took me a long to have any positive feelings. I finally did but my life was miserable for 2 many years because of the unknown & my family was very unsupportive.
Of course we all want a better prognosis, I meant the statistics…being correct and such….
Hmmmm… my gut reaction on the positive outlook may help cure you is another “it’s all in your head”.
Oh goodness no – we have to get past that ridiculous notion. There is so much proof the illness is real – I just don’t understand how this ever got any traction.
The reason why our outlook is important is very simple – there is no easy magic pill cure. So recovery results from a combination of lots of actions and treatments that vary between people. If you think the prognosis is hopeless and you can’t get well – why would you do anything to try to get better?
Dan, generally I find your approach quite reasonable, but it seems that you are mostly leaning towards Gupta/DNRS theory, aren’t you? I see quite a lot of people who are so stressed about their symptoms that I actually do believe that this could be a game changer for them, if only they understood that. But what about those who don’t have this issue, but still have significant problems?
Also, I find your reluctance to tell complete story of your recovery strange and I think it diminishes your credibility. And no, the link you provided doesn’t cover it. Only thing that is mentioned is meditation, and even that doesn’t tell much.
I am not sure if that is what Gupta/DNRS theory is saying and I cannot speak for them.
But it is my view that the illness isn’t psychological – it is neurological with numerous secondary dysfunctions.
For many of us, these very significant physiological dysfunctions trigger our nervous system. But if you think about it, this is nothing new – you already know of the many many different things that trigger your flare-ups! These are all real physiological events, like exercise, infections, lack of sleep and even certain foods. What you describe leans a bit towards the old ‘it’s all in your head’ – we are well past that and research shows that the illness is real as are the symptoms. Having said all that, I am sure most people would agree that psychological stress can also be a trigger – but to suggest that the only thing going on is a bit silly.
The links summarise what I did – I have given interviews where I discussed it at length. Not sure how much detail you are expecting in a blog comment?
I think the problem is that people are always looking for some single miracle secret strategy – if you have listened to how people recover, then I am sure you will actually hear that they did all different things, many things that you have probably tried without success. This is why I don’t place much importance on “what someone did to recover” per se.
So that’s the reason for my reluctance to trap on about my experience. Yes there are valuable insights to be gained from my experience, but I feel it is going down the wrong track to look to simply copy what someone else (including myself) did. That might work occasionally, but most of the time it is all about tailoring your approach and focussing on the root cause – in my view.
I don’t think the prognosis is hopeless! I have lived the last 16 years with hope of getting well. I don’t however equate hope with a positive outlook.
I also believe spontaneous “recovery” would happen whether one has a positive attitude or not, just as this disease has affected those of us who are positive and those that are negative.
Until a proven cure has been presented I will naturally experience many feelings, not the least of exhaustion, pain and yes depression. Suffering with this f-ing disease to the extent that most of us do most certainly cannot deny being depressed by all the loss.
I don’t need added to all I experience the suggestion that if I don’t have a positive outlook I would not do anything to try to get better. It is insulting.
I have hope, I am not hopeless.
Good to hear you having retained some hope (you are doing better than I did!). Yes, your point about hope and a positive outlook is a fair one.
My belief based on my experience is different in regards to “spontaneous” recoveries. In all my years, I haven’t really seen what I would call spontaneous recoveries. Certainly, I have come across people who weren’t sure why or even exactly how they recovered (that happens a lot), but I have always seen them take certain action steps – it never ‘just happens’.
It would great to have a ‘proven cure’, but as I have explained previously, outside of bacterial infections, there aren’t really many ‘cures’ per se. I think it unlikely (although not impossible) that a one fits all single effective treatment will come along.
There was no offence or insult intended. I felt it was reasonable to presume that if someone thinks there is no chance of a positive outcome from an action that they wouldn’t take it. Appreciate you make interpret the meaning of these words differently, but certainly no offence is intended in any way.
When I didn’t recover from a febrile illness in 1979, I assumed that I would recover. Nobody was saying i wouldn’t. Slowly, over the next 5 years, I improved in fits and starts. By the mid 80s I was better but far from well. I still assumed I would continue to improve. I pushed and crashed, pushed and crashed… always assuming that I just needed to figure out the right way to push and I would, once again, be well. Nobody said otherwise. I lived life, I worked, I made plans which were, in hindsight, reckless. I even held forth about how this or that thing – supplements, negative ion generator, surgery, meditation… had cured me, almost, again and again. Had I any idea that my incomplete recovery would not last, I would have made very different decisions regarding many things and would not have ended up losing everything that mattered to me and ending up in poverty in the late 1990s. I would have done all the things that I loved but I would have done those things with a safety net. I didn’t. Ignorance is not always bliss.
That’s such a good point – perhaps in line with what Jessica was saying above!
Having a positive outlook can also be unhelpful – which is why I personally shut the door on recovery after years of having my hopes dashed. But of course, until I got diagnosed I didn’t even know what I had, and when I finally did, I didn’t know recovery was possible or what I could possibly do to get there!
Hindsight can be wonderful thing.
Dan, We were posting at the same time. Mine is a further to my own post, not a reply to yours.
That said, it is a relapsing and remitting illness. That doesn’t mean that one will always relapse any more than someone with R&R MS will always relapse. Spontaneous recovery is possible and in the first several years, not even uncommon. Sometimes it lasts, sometimes it doesn’t. But it would be irresponsible to tell someone with MS or ME, that they will never relapse and should not be smart about their future.
You know, I even considered peddling one of my miraculous “cures”, for a time, and thought about “coaching” people with ME in mindfulness, convinced that I could encourage them well as I was… almost. The fact that the renowned Buddhist Teacher Pema Chodron has not been able to rid herself of ME, notwithstanding. I am grateful that I didn’t. I wouldn’t feel good about it if I had.
Hi Christina
Well, I agree that these ‘spontaneous’ recoveries can be more unstable – that has been my experience also. I have seen people get sick again, sometimes many many years later.
However, when people understand how and why they get well, in my experience, their recovery is much more lasting.
Things like ‘mindfulness meditation’ can be fantastically helpful for reasons I have discussed in the past – but I think they are less likely to really lead to ‘remission’ or recovery on their own, although it sounds like you had excellent success with it.
My advice is always to engage in a multilateral approach, and I feel the key foundation is understanding how and why things are helpful.
There’s several groups of highly qualified scientists working very hard to understand ME/CFS and hopefully to find some effective treatments. Even with all their modern laboratories, extensive testing protocols and years of research expertise, they’re only just starting to get some insights into the root causes of this disease. And yet this guy worked it out all on his own. And he’ll tell you how to recover. As long as you buy his book or his online programs. Forgive me for being sceptical.
Hi Tim
Look, I totally get where you are coming from – I would have said the same thing many years ago.
There are many researchers who have arrived at the same conclusions, even going back some decades (I didn’t realise I was re-inventing the wheel).
The problem is that without a simple single effective treatment, there is very little reason for greater consensus to occur in the medical community. If we had a pill for it that worked, everyone would be on board saying “of course, it’s obvious that is what is going on”. Sadly it’s not that simple.
PS.: I have been sharing my thoughts on this for years – it’s not exlcusive to a book. It’s just not simple like writing an article of ‘just do this’ and all is well! I did try to summarise things when I first published the book here – https://www.healthrising.org/blog/2013/02/24/a-single-cause-for-chronic-fatigue-syndrome-core-system/
I do appreciate the writers care about us and want to give advice (thank you), but why do some of these blogs have to be soooo long. The above blog could have easily been half the size. Please remember reading is difficult and taxing for many of us.
Thanks for the feedback Brendan – will keep that in mind.
I agree that hope really helps, with one’s quality of life if nothing else! I want to comment on the reporting of recovery stories. I am not fully recovered but am much better after years with this illness. I reported my recovery story on HR and got hit with some nasty negative comments. Cort tells me that recovery stories are among the most controversial things he posts. Let’s try as a community to do better than this, to be grateful to these people who give us hope and to appreciate their efforts to help other patients.
Sadly that is all too common Marilyn – same thing happened when I first went on PHoenix Rising and I people tell me that all the time. It’s one of the reasons I think why people are sometimes reluctant to share.
Nicely, said Marilyn. Hopefully over time as more treatments show up, we will have more and more recovery stories. What has struck me about the recovery stories is how many different routes those lucky enough to have restored their health, have taken.
Absolutely Cort – that’s why I feel reluctant to speak about my own recovery journey in detail – I just don’t think it serves the majority of people.
Maybe we need to define recovery but I’m not sure how. How long do you have to go living a normal life without relapse to be recovered? Someone can be normal again and then relapse 12 years later. Was that person recovered or just in remission? I propose that if you are living a full, normal, symptom free life for five years without a relapse, that could be called recovered?
Well, it’s not an easy thing to define is it. It’s not just about whether the experience ‘a relapse’ but what if they have some peripheral symptoms that they still experience that are very minor?
My feeling is that the best way to define it is whether the person can function fully again, but also whether the can experience stressors without experiencing a flare-up. I think this is really more definitive than a time factor, because I would propose that someone that is fully able to engage in life without significant symptoms and able to experience even very strong stressors (including infections, physical trauma or psychological stress etc.), that such a person is fully recovered, even if they were to eventually get sick again.
But I think it’s definitely something worth exploring in more detail and a fantastic conversation to have!
Hi there Esther,
One thing is for certain, NOBODY ‘relapses’ for no reason. That is an absolute fact. Which therefore means it could be prevented.
Mixed views here
I have spoken to someone vastly improved by Dan’s strategies. Relaxation, a different frame of mind, and a change in perspective will help many people. But to offer these practices as a recovery protocol for a complex biological illness that many have for life can come across as exploitative. Keep in mind that Dan offers his services as a paid health consultant, sells a book, and sells a video series, so he has a strong profit motive. His techniques are not independently audited or formally researched and as far as I know he has not published any internal recovery data from his program.
There are scientists like Ron Davis working around the clock to solve this, and there are some very severe patients for whom this sort of treatment would be ridiculous to recommend.
Also ask yourself what the response would be if this was being recommended for HIV, MS, or heart disease.
That said this article will help Dan get more customers, and they may benefit to a modest extent from his coping advice. I think it would be more ethical on his part if he presented it as such instead of hinting at a scientific basis for a cure
Thanks for your comment – although I don’t feel that “relaxation, a different frame of mind, and a change in perspective” really represents what I am advocating.
It’s my view that whilst there is lots of wonderful research into treatments still coming, that the illness is not the ‘mystery that needs to be solved’ as you are saying.
Not sure what ‘this’ is in relation to your comment with HIV, MS or heart disease. I assume you are talking about the importance of a positive prognosis. I would say that that they are absolutely critical in those examples also. If you MD would say for HIV and heart disease, there is nothing that can be done and any treatments offered can’t really help – I don’t see anyone changing their lifestyle or taking the medication prescribed. That was the point I was making – we need a positive outlook to take action, not that it will somehow miraculously cure us (if only).
On your last comment – my book and efforts have not focussed on ‘coping advice’. Indeed, I am seeking to create a shift towards a more scientific basis for treatments and recovery as opposed to symptom treatment. So I am not hinting at it, I am saying it outright.
Appreciate your thoughts – sorry if you don’t feel we are on the same page.
I do want to point out that for years Dan spent a great deal of time on his website without any monetary renumeration except I suppose from his book. Several times he commented to me about the enormous amount of time it took but that he felt driven to do it. For me its an asset when Dan or others who have recovered return to tell their tale or work in this field. In fact, its surprising how many people do decide to work in this field after they get well. I think that is the result of the often life-changing nature of this illness. Getting that ill and then recovering changes people.
Thanks for your comment Cort.
Yes, experiencing this illness it’s a life-changing experience, no matter what happens.
In my experience, most recovered people either completely go underground or climb to the rooftops to shout out about their experience – there seems little in the middle.
Thank you for caring about us. I have been terribly ill for 33 years. It is comforting to know that those who become ill behind us will hopefully have HOPE.
Thank You,
Patte Dotson
Thanks for your positive comment Patte – glad you were uplifted.
I have had several illnesses, including one I an in remission for with no explanation other than my own theories. I can tell you every time I have been faced with “oh yes you will be fine!!”
It didn’t work out for me (at least not in the treatments I was told). In a way, the statistics have been validating for me and how bad things are. It felt more hopeless when I heard that 80% or 60% get better, and I couldn’t.
And honestly in some fields of healthcare currently (unfortunately rheumotology often is a culprit), with some doctors- this translates to a doctor angrily snapping at you “you just want to be ill, if you wanted to get better I could have fixed you.” It is a sad story I have heard often, and even experienced myself (in not so direct words).
The statistics I hear though have also made me appreciate wanting to not get worse.
However I am not one of those people who thinks that recovery isn’t possible. I do think some recover, or at least remiss.
I also do not think that we accurately present how bad this illness can get even when talking about the severely and very severely ill.
I think you need to hear both to get a complete picture of an accurate generalized prognosis.
Regardless of statistics or anecdotes or patient compiled statistics- given how diverse we are I think different things can help different people.
I come from the autoimmune community of illnesses before this. Plenty of people live in a state of denial that 1) they cannot get worse/are not sick
and
2) they are recovered when they are really in remission and have a temporary state of well. One bad flare sends them back to their worst state of health or potentially starts a decline of health, which unfortunately sometimes also some don’t make it. Or the meds that work stop working. Or they decide western medicine is BS and end up with no treatment and organ failure.
With that said I am glad you found something that works for you. I know we all need to make a living, but I too am made skeptical of people who present things for sale, especially if not from a medical doctor background.
I am thrilled you have recovered, I hope the people who are willing to give it a try find some things that work from your protocol.
Ok blame the brain fog but I sort of was vague— my POTS, FM and ME/CFS are not in remission. I was fairly complex so I am specialist diagnosed otherwise I don’t think I would have ended up with the CFS disgnosis even while having pre-existing autoimmune problems necessarily.
Look, I must admit my first response sadly is still a bit of anger – it’s bad enough being sick you don’t have people have a go at you!!!!
But to show some sympathy for that doctor, I think the problem comes from the whole way we all think about health. So it’s not just the medical community, but also the patient community – everyone thinks that the doctor ‘can fix them’. In reality, outside of the surgical ward where bits get reattached, this isn’t really the case, is it?
Totally get the scepticism, but not much I can do about that. It’s not like I am promising miracle cures, but I am saying the illness is not as mysterious as made out and that recovery is possible – and I stick by that!
So some people are totally against anything not from the medical community – whilst others are totally against anything from the medical community.
In my view, it’s about being open to all your options and making intelligent choices – I think you made that point well with the people that refuse their doctors advice!
Thanks for your comment.
I like Shy’s comments about people living in a state of denial, that can be very damaging and seems to be promoted by many…think you are well and you will be, it is a bit trickier than that…again, I think it comes down to accepting the illness and doing your best to work around it or within it’s limits…even after 10 years of being ill, I still find it hard to accept and it is almost unbelievable to me…that this illness has such a learning curve and keeps changing makes it all the more tricky.
It must be wonderful to feel well, Dan, good for you. What is never discussed is
that “crashes” happen so often because of life circumstances, i.e., death of a
loved one; being told to re-locate because your partner can’t bear it any more
and wants a new life; getting a huge unexpected blast of paint spraying from
building site next door, when you have told them to warn you; the person closest to you who supports with shopping and cooking evening meal, gets a frightening
diagnosis of a well known illness; you go to ocean for healing and get dumped and have a debilitating painful back injury, aided by the weakness of your muscles; I could go on an on; I was looking like recovering in 2005, a 7 years of ME/CFS,
and these are just some of the events. Not to mention finance. Sound like a
whinger? I’m not, it is just the truth. I do everything I can when I can to help my
recovery, especially in a natural way, and am lucky enough to have a friend who
is a practitioner in energetic therapy (scenar) who treats me free. We persevere.
I don’t think you sound like a whinger at all – I mean it’s just the facts isn’t it. It is frustrating and this is what can make recovery a challenge.
But remember also that you don’t have to live in a trigger free utopia to recover. It’s about making progress and retraining the nervous system to respond normally to triggers. In my experience, just as we spiral into the illness, like it snowballs so to say – we can also go the other way.
Sometimes it is about lining up all your ducks in a row – when you feel it is the right time, I hope you make another push for recovery – good luck! ?
It is great to hear from someone with such a positive approach and outlook Dan
Thanks Michael ?
From the time I got sick in 1986, I heard of some people who did recover, often spontaneously, and some who got better and assigned their recovery to whatever treatment they were experimenting with at the time. These recoveries were in the early years of illness. Also many thinking they had recovered were only in remission and got sick again later on. But even a good remission would be welcomed by any of us. My understanding is that Lipkin and Hornig at Columbia indicated that recovery is possible in the first five years or so, after which it is unlikely. Possibly you were still in that biological window at seven years. And you have a permanent recovery. I hope so.
One other point I want to make is how people who get better or recover assume that happened because of whatever treatment they are using at that time. Which very much confused the picture of what might help. I was sent home to rest–no anti-virals available in those days for my EBV infection–and got better with no treatment at all other than bedrest. But I never got well.
Something bothers me about this focus on prognosis as a form of positive thinking which is what it sounds like to me. I prefer cultivating my hope not on my projected prognosis but on living in the present moment and doing whatever I can to further research and advocacy to find the cause, treatments and eventually a cure for ME. I’m in my 32nd year with ME and it is unlikely I will ever be well but I have experienced improvements from getting treatment for orthostatic intolerance, using Nitroglycerin and from Xifaxan for IBS-D and SIBO. So I hope for other improvements in the quality of my life AND if they have a sudden breakthrough, maybe something more. But my surrender to what is real in my life even though I don’t like being ill brings me peace. And I think living in reality and peace, not struggle, is something that can only help me keep hopeful. I’m old, but we really need to fight for the young people getting sick now who have no future at all.
Thanks for your comment.
Dan thankyou for your comments. I appreciate your good wishes. I have never expected to live in a trigger free utopia, ever. I am coming up for 20 years of ME and I congratulate myself on surviving that, given the circumstances.
I feel somehow your CFS/ME may not have involved the head problems, i.e. inflammation to the nerve endings of the brain. I feel somehow you don’t understand to “make progress and retrain the nervous system” is not a possibility
when you have had a huge crashed from too many life happenings. The ducks do not line up, some of them have sunk.
Maybe one day they will, whatever it means. We are definitely not of the same
heart centre. When I first read your reply, I became so despondent at the thought
of what I didn’t understand and couldn’t do to get better. Then I realised maybe
you have been listening to Dr. Jo Dispeza. Then I realised I just shouldn’t dabble
with this any more as it is making me feel worse. Haven’t even been able to glean
some small morsel. Dan you Ain’t my Man, but I am sure you are The Man for many others.
Hi Billie – sorry – didn’t mean to suggest you were looking for that ‘utopia’ – I guess I said it because many of us wish for it whilst we are sick looking to recover.
Totally get that it’s not easy to find that space – and yes, you are right, perhaps those ‘ducks’ never ‘line up’ – we just have to do the best we can given the situation which sadly is often not that good when we are so ill.
Whether we are “seeking recovery” or “just trying to get by” – making the most of each day and finding some sort of happiness in the face of the difficulties we encounter is always worthwhile.
Hope you have more good days going forward.
Thank you for daring to suggest we could be positive about our futures. I think the knee jerk negative reaction to any one suggesting we could find a path to recovery comes from years of frustration, of trying and failing, of not being taken seriously by the medical community or our own friends and family. We fight back trying to prove our illness is truly devastating and has a biological basis and in the process we dig ourselves deeper and deeper into our belief that we are hopelessly and irreversibly Ill. The reality is that there are people getting better, ( you can find it in some of the literature and anecdotally and on all of these community forums,) but that they are all doing it often in distinctly different ways.
To be clear, I am not one of those people — yet. I’m deep in the struggle. Often confined to my home. I was told by my rheumatologist, ” nobody knows anything about this illness And there is no cure So I recommend you stop searching, because the search is toxic.” But he was wrong! A lot of people now know a lot about this illness. So why believe the poor prognosis from an ill informed doctor?? I personally believe we should dare to hope! Especially because so much research is being done right now! there is a broader clinical picture emerging and I believe that within that broader understanding we will truly find that there are many different but real pathways to increased health and remission, if not recovery.
One thing ive noticed is that if someone finds a helpful path to recovery, they are crucified on ME/CFS forums for daring to suggest that they had this terrible illness and found relief. So I can see why they may disappear from those groups and chose to focus on living their lives. And yet — By not making them welcome in the community any longer, we cut ourselves off from gaining possible gems that could help us.
What an insightful comment you make – I really feel that the ME/CFS community has fallen into this trap over the years. It strikes me it’s not quite as bad perhaps with Fibromyalgia and POTS because pain and passing out is taken more seriously it seems.
It still frustrates me to no end when people have to ‘prove their illness is real’ – it’s just crazy. And it’s even more crazy when it happens from our own patient community. I see this all the time when people recover and share their journey only to get attacked and told they didn’t really have the illness – the very thing we all hate to hear!!! I know many people don’t speak up about their experience because of what they read when others try to share something positive.
Indeed I think the community has becomes it’s own worst enemy in some ways – you have to ask yourself, if you were a researcher, would you really want to deal with such a hostile crowd?
Good for you for choosing your own positive outlook despite the negative prognosis you received. Like I said, with doctors not having a ‘cure’ to offer you, and the negativity on the net, I do understand how your doctor came to make that comment – but that doesn’t mean you have to make it your reality.
Thanks you for your positive and insightful comment – I wonder what Cort thinks about all this – it’s clearly a sensitive topic.
I think the same Joanna. When someone from the ME/CFS community announces they are healed, cured or in remission they are absolutely slaughtered for it! They are disbelieved and as you and Dan say told they never really had ‘it’ in the first place. Such a disrespectful response! And by displaying a response like that have actually become just as dismissive as some of the Drs or Jo public that they complian about!
I do believe in the theory of the ANS being a major player in this illness, but I’m not sure how to change it!
I think from reading this blog and comments thus far both from patients and Dan, I’m going to look at the ‘why’ a bit more closely.
I am coming up to 8 years of my illness at the end of this month and I know I’ve had better times and worse times. I think I need to be working with my functional dr more with assessing why this is so.
I ve been experiencing my worst relapse these past 6 months. It’s presented increased severity in symptoms along with some new ones. As a result I became housebound and finally bought an electric wheelchair.
The past 3 weeks I’ve started to improve. Got walking a bit, driving alittle. I finally started to feel as though I’m turning a corner so much so that we invited friends over for dinner last night. All I did was lay the table and apply makeup?. As the evening wore on I became tired and then one of my ‘new’ symptoms returned after several weeks of not having it. My speech started to slur and walking became difficult.
So, Dan. What I’m gleaming hopefully from your comments and article, is to find out the why to this. Is that correct?
And one more question, how in your opinion do you find the ‘root cause’ as you’ve mentioned this to be fundamental in recovery?
Thanks for listening to my rambled response!
Absolutely spot on Fiona – I am not sure that most people get the irony: the very same people that are so upset about not being believed about their symptoms and health, end up doing the same thing to another person who had the same illness – it’s crazy!
So sorry to hear about your flare-up – it’s so frustrating and upsetting I know.
The the ‘why’ and the ‘root cause’ are connected and the same for everyone in my view – it’s the dysfunctioning ANS. The key for you in my view is to identify your individual secondary dysfunctions and triggers and address those in one concerted effort. The reasons I feel understanding this is fundamental for recovery is because otherwise, symptom treatment and addressing secondary dysfunction is just a merry-go-round. If you don’t correct that which is creating all the symptoms and dysfunctions, the illness simply perpetuates as the symptoms come back. Another way to explain it is that you can mop up your kitchen every single day, but if you don’t fix the broken water pipe or hole in the roof, then tomorrow or the next time it rains, your floor will be wet again. Fix the cause, not just the consequences!
I detail these connections in CFS Unravelled, but you can check out my earlier articles on Health Rising or the videos on my website first if you wish.
(…)’He believes that autonomic nervous system dysregulation plays a fundamental role in these illness’.
I totally agree with Dan on this one! This system must calm down. In ME the ANS (you) can’t relax anymore.
I agree as well. For years I thought it was kind of an incidental part of ME/CFS/FM – now I wonder if its crucial…
For the first ten years before I found a good doctor I spent a lot of money on alternative treatments. I’ve been going to the top of the line Klimas Clinic for six years, tried all they suggested. Nada. I still try thing on my own, I pace, holping for better functioning. I know some people get better but recent research on subtypes based on the severity of 11 proinflammatory cytocines corresponded to the level of illness. My grandmother had this before the disease was even named and recovered spontaneously. I get irritated at people selling books about how they got well…I’ve seen so many get well stories with just as many different reasons.. More money to spend for something that may not benefit me. Why not just write a paper, share what you did and offer it free since you’ve worn these shoes?
Hi Pris – totally understand where you are coming from.
I agree, this whole idea of just do what I did sounds good in theory, but in practice, we know that is not a reliable approach. However, I do think that people who write books about their recovery mean well and do have much insight to share. I always encourage people to look beyond ‘what’ people did, and rather look and ‘how’ and ‘why’ they did it.
I have personally have shared what I did many years ago and on many different forums – I don’t think it’s anything you haven’t heard before – but of course you are welcome to read my recovery story or my early interviews where I discuss this if it interest you.
if you recover then then yo are a luck men but most of fibro patients woman and it is fact that there is more then one fibro + the “psychosomatic fibromyalgia symptom “.
I have fibro 40 years and I’m not old, I become it with 4 years after a very heavy meningitis(1976), but unfortunately they found out what I have 2013- So more then 70 % of my skin have defect nerves (it feels like you have ever a thin cloth on and this is the smallest symptom) 8 years ago the pain grows and a year later I become more and more weight without more eating, it stops if I found a good pain doc and become a good pain therapy with oxycodon. I know so much become antidepressiva but I have a lot of problems with medicine the heaviest is the paradox symptom so 20 years ago I become antidepressiva against pain and it won’t work, only I become the first and only time symptoms like a depression and more pain (more then 30 % of all female fibro patients have paradox symptoms with antidepressiva or other medicine).
It is hard if you can feel like your small nerves die more and more and nobody can do someone against it. Today my muscles are out of order with musclespasm every day but fortunately I become dronabinol against it and it is better.
My luck is that I live in Germany so we have a very good health care system and I don’t have to pay a loot of money for wonderpills , false bloodtests or “the cure of all”. (I know in the usa someone have fear against a health system like ours they mean they lost money but fakt is that our docs and pills are cheaper because the system thay what they have to coste. Ok our doctors have no 3 villas or boats but all become what they need (yes you can pay more and you become more its like in all ever, more money more service).
What I try to say is the nervdisfunction have more then one root and if you a small time ill with fibro there can be a great chance to get health again but in the middle they need more then 10 years to found out that you have it.a good therapy could be the underpressure chamber for divers with pure oxygen, in order to bring the Arteriole which is also not in order to regain. And if they do it early enough a loot of peoples can be, let me say maybe not heal but on the way (sorry for my bad English hope it is to understand) An don the way I have two health kids and a men , friends and so on. Fibro is a bad thing but if you grow up with this, its like a bad friend. I try all what I can found pills, meditation,etc and I don’t give up to try and I don’t give up to smile. Sometimes hard but we have only one life and this is mine. Good luck to you and to all others.
Thanks for your comment Alexandra
It’s rough and I can’t imagine what it must be liked to have dealt with this all your life. Well done for seeking and finding positive experiences in your life despite these challenges. ?
Hello Dan, so happy that you found a healing. I think that the timing of this is unfortunate because it really feels too much like CBT to me, it’s all in your head, just think positively and meditate, really just doesn’t’ cut it when your in the depths of despair with this illness that feels like death. You are making it sound to simple to get well, I mean why wouldn’t everyone do this then, you’re telling us you have got well with no pharmaceutical intervention. That’s like saying this illness is easy to manage and that does nothing for our cause. I spent a lot of time researching, a ton of money and taking every herb, supplement that could possibly be the culprit, I even did autohemotherapy for about a year trying to boost my immune system. If you’re not taking an antiviral I don’t think it is ME/CFS that you had. I continue to be hopeful, but I am very cautious of an easy fix, which is how this comes off.
I haven’t tried Dan’s program so I don’t know how effective it is. (I’m one of those who think/know recovery is possible but who have not been actively searching…). As to whether recovery is possible for everyone – that’s quite a question! I think that Dan’s thesis that knowing the recovery is possible for us does help us to take the actions that might lead to recovery is a good one.
Of course for many of us there are resource questions; i.e. I have the money do I continue to spend it on what the past suggests might be a fruitless endeavor or do I continue to go for it (and give up some other things?)
A really difficult question!
It’s confusing, isn’t it!? I try my best to convey my view accurately but it isn’t always easy.
I would say, that my whole core message is that the illness is NOT “all in your head” – that is what CFS Unravelled is all about. Showing you how the REAL PHYSICAL SYMPTOMS are created in the body. But it is about much more than that – it is about WHY they are created because understanding this is key to recovering and staying recovered.
Not sure how I made recovery sound simple – I guess perhaps because it is CLEAR for me how it happens and what the framework is. But it isn’t easy and in many cases, far from simple. This is especially the case when people engage in all the critical core strategies including brain-training but still have frustrated results. Finding and adding the additional strategies to make a breakthrough can be very frustrating in some cases.
It’s interesting because it sounds like you are suggesting that unless you take an artificially created compound (a pharmaceutical), that the illness isn’t serious. I don’t agree with that. Also I did take some pharmaceuticals (both during my years of illness and my recovery), it’s just that these weren’t instrumental in reversing primary or secondary dysfunctions – they were really just symptom relief (which was welcomed when it worked).
So in summary let me clarify – no easy fixes here! (or elsewhere that I am aware of)
I am interested in all recovery stories and I am grateful for all people of good will who share theirs. They are often received with a mixed welcome.
It is good to know that some people recovered. Believing that you can recover however is a mixed bag. It gives you incentive to try out new things. If you took the wright turns (for your personal case), that can be a good thing. However the statistics for choosing the wright path are slim. There are hundreds of people with a known recovery but also thousands upon thousands who got worse trying to recover.
Having good hope and try out things therefor may statistically be a poor choice. This back of the envelope calculation tells me the average person can expect being worse of.
On the other hand, having a strong believe you can get better is nearly a prerequisite for having any chance at all at recovery. If you do not stand firmly against all odds and statistics and if you do not get up on your feet after being smashed to smithereens time and again you won’t get close enough to recovery even if you make mostly good choices.
People who recovered too often are overly positive on recovery chances for others. But those who genuinely recovered are frontrunners who show what potential paths to recovery there are.
Many scientific based cures often come from further building upon these experiences. One such example is the palleo diet for otherwise untreatable epilepsy, it is now accepted practice. So it may be good to acknowledge these people by not putting their recovery into doubt.
What a fantastic comment Jurgen – I have nothing to add to that! ?
So many thoughtful comments, we each pick what we resonate with. In 1985 an immunologist said to me ‘Whatever you have got, it is not fatal so don’t worry about it”. No? OK!! In 2017 following 2 severe perfume, deodorant crashes, a Dr said to me, ‘Whatever you have got, you are right up there with them’. NOT. I am pretty well when I avoid other people with their chemical products, medications, petrochemicals etc.
About writing books, I have one out as an Ebook, just coming out as paper back. It is a memoir about having ME. ‘Dear M.E’ I never expect to get back the dollars sunk, yes sunk without trace, into its production, nowhere near. It came about from a hope that just a few ME ‘friends’ might consider a different way to view their experience. We are all totally individual but growing in personal ubderstanding and consciousness. Having ME for 35 years has changed me, Jen Brea says it has changed her, she says she is grateful for what she has learned however painfully gained. I too am grateful for what I have learned. Yes. And thank you to Cort, Dan and all others in the ME ocmmunity who are willing to put themselves out there and risk even more of ‘the slings and arrow of outrageous fortune’. I am sure we can & will all benefit from our combined understanding.
Thank you for your comment and acknowledgement Audrey – putting oneself ‘out there’ isn’t easy.
So true how people pick up on different things depending on where they are right now!
Its the last part” I am actively searching for a cure” thats relevant. Going from one “doc” to another for 20 years and picking and choosing the bits of info or medicine that help. Not relying on any one person except yourself.
To Cort, and the Health Rising community,
I apologize for my first response, which was the first response to this thread, about not trusting anyone with something to sell.
While I do believe that, I sometimes have a problem with being WAY too direct and open, sounding negative and ungrateful in the process.
It IS helpful to know people sometimes recover, and Health Rising is my favorite, most helpful, most illuminating source of hope during this illness. It helps me know there are others like me, that research continues however painfully slowly, and that while few better treatments have been identified, they may soon be discovered. It is helpful in many other ways as well, by being such a large compilation of resources, studies, what others have tried, etc. Health Rising is something without which I could have LOST all hope.
So thank you to Cort and those like him who tirelessly (poor choice of words, huh!? ) commit themselves to the study, the collection of information, the community and the sense of hope. There is every reason to have hope, but it can be very hard to identify in the depths of illness and over the passage of time. Health Rising is a bridge that makes it MUCH easier.
Nancy, I think your last comment was incredibly humble.
The problem is one size does NOT fit all does i? And I think this illness is a journey for all of us in the sense we are often fumbling through to find improvements let a lone a cure!
And then we become despondent because what we’ve been trying doesn’t seem to be working
And then, we get a ‘cured’ story!
And for me personally, the reasons I ( and I speak solely for myself), I flip into doubt about their cure or wether they were actually that ill in the first place is because underneath I feel I haven’t ‘done enough’ or ‘done enough’ of the thing I was trying.
I feel like a failure!! And I feel like a failure because I can’t make myself well like those in the success stories.
Instead of leaping for joy for others who have found relief and wellness , I go into a deep despair of ‘woe is me’ and that I’m not going to get where they are.
And on occasion, in order for me to not have those depressive feelings if you like, it is easier for me to deny the validity of others.
And I dont want to be that person! At the end of the day whether others really had an illness or not is not my concern.
But this thread today has really helped me to not give up on my journey.
If you’ve read my earlier post, you’ll see that I’m really crashing today after I thought I was just starting to turn the corner out of my relapse. Last night, when my slurred speech returned and my walking slowed and my balance started to sway, I could feel the despair arising in me. The same this morning. Holding onto the bannister and gripping every rod to re climb the stairs I said to my husband “I’ve gone back again haven’t I?”. His reply was, only for today! ( my husband is an extremely positive and optimistic man! I call him Mary Poppins on Prozac !?).
And then I read this article!
It’s extremely hard to remain positive and hopeful when faced with the ground hog day of chronic illness! And don’t I want to punch the lights out of those who tell me to ‘keep positive’. But, from what I understand from reading Dans article and subsequent discussion, is that, aiming to be positive is not the cure, but it’s a tool to help us push on to find ‘our’ unique cure or even respite!
Dans cure, and others like him, may not be ‘our’ cure, but I want to see them as an encouragement to keep fighting and to keep looking.
I also agree with the view of some Buddhists above that finding a place of peace in the here and now, where I’m at, and enjoying what I have is something to be sort, and in my view, in tandem with finding my own renewed health.
(And I need to print this out, because writing it is a bit of one of those light bulb moments, but with my brain fog it’ll be gone within seconds!??)
All the best!
Thank you for your heartfelt comment, Fiona.
This self-blame is quite common and understandable, but you have to find a way of letting that go because it just isn’t fair on yourself. Think about it, if your best friend or your daughter/niece were to speak like that, what would you say?
You have to recognise that that indeed “one size does NOT fit all”! That is the core message I am advocating and the whole basis of my recovery program. That’s why CFS Unravelled didn’t present a ‘cure’ or ‘protocol’ for recovery, but rather a framework for people to tailor their recovery action plan.
Lovely to hear about your positive husband – I was lucky enough to have a wife that was very similar to that. I remember it often felt very strange and unnatural to me as I could really bring myself around to such a positive outlook (I was what is know as ‘realistic’ 🙂 ) But the impact this had on me was non-the-less profound.
Thanks for making the point again about the importance of the ‘individual’ journey which again re-iterates why I am ‘reluctant’ to talk ad infinitum about how I personally recovered.
I hope you find ways of being gentle and kind with yourself in the same way you would with others.
Kind wishes
Dan
Hi Dan…
I read your book and viewed your free resources previously and blog posts previously son have a basic understanding of your views…
In my mind there is no doubt that the ANS is a crucial player in the illness I have whatever we want to call it.. But the question always come back to whether it is the causal function…
I am wondering whether you get the chance to keep up with the latest research… I am thinking of the recent finding by Melbourne Bioanalytics that ME patients that meet CCC criteria are over 20 times more likely to have genetic mutations in the G Protein gene group than healthy controls…my understanding is that this genetic vulnerability would have potential implications for many systems including energy production and ANS functioning…
Do you have any thoughts on this finding and how it might or might not fit your beliefs?
Cheers
Anthony
Well, I think one should never filter good science to fit in with your beliefs or ways of thinking, but unfortunately, that’s exactly what most people (including researchers) do.
There is so much research, I don’t keep up with it all. But I have no problem in accepting those research findings. How much of those epigenetics occur before the illness and how much during I am uncertain of, but again, it may not actually matter. I certainly see very obvious pathways for it to occur whilst people are sick.
Such changes may not only lead to the perpetuation of ANS dysfunction, but may possibly also lead to a predisposition. I suspect that some epigentic changes may also result in changes in function even for people that have recovered. However, I don’t think that this would preclude people from recovering – although I imagine it depends on the details and severity of the changes in the individual.
Hi Dan…
Thanks for your response and the time you continue to put into helping those of us who remain unwell. I agree with you that we shouldn’t try to fit research into our beliefs rather let the science stand on its own. Knowing the quality of this research that is why this research is so exciting. For your information they were looking at snp’s which are not epigentetic but rather found in the DNA sequence. And to discover a group of SNP variations that are 20 times more likely in a disease is incredible (given that researchers are usually very interested in SNP variations that are 2 times more likely)…so my understanding is that if in fact these mutations play a role in me/cfs they are not epigenetic changes that occur as part of illness mechanism they could only be predisposing factors that contribute to the ANS disfunction.
Cheers
Anthony
For your information the researchers were not looking at
I should also say that my personal experience contradicts your view that a positive prognosis and thinking in terms of recovery rather than remission is helpful. I personally had a positive prognosis during the first year of my illness of post viral illness which I was told would improve in time…I believed I would get better and I did in improve to the point where I thought I was recovered. If I had have known that I was only in remission I believe I would have been much more careful with exertion and may not have had first major relapse. I was eventually diagnosed with Lyme and with antibiotic treatment and rest symptoms remitted to point that I believe I was recovered again only for graded activity increase to trigger a 2nd major relapse… Long story short I have progressively worsened with each relapse which has left me bed bound and unable to talk for the last 6 months. If I had have known I had ME, given a realistic rather than positive prognosis with an understanding that there is no recognised treatments and that many people diagnosed with ME by physicians do not meet CCC or ICC criteria, followed by thinking in terms of remission rather than recovery I believe I would be much healthier today. I believe that my optimism, positive prognosis, and belief that I had recovered made me a danger to myself and contributing to a progression of continual bigger crashes with less recovery over time. A prognosis that there is no known cures and view to managing the illness and an understanding that I was in remission rather than a belief that I had recovered would I believe have me living a much more functional life today and kept me from being a danger to myself…
Hi Anthony
Totally appreciate your point of view.
It’s my view that a deeper recovery can happen where the exertion doesn’t lead to a relapse. I also feel that understanding the dynamics are very important so that we understand how and why we recover and why we get ill. If you are familiar with the book and videos, you may even recognise some strategies that you may inadvertently engaged in during your first recovery, but probably abandoned after that.
Most people find that simply increasing activity leads to disaster sooner or later – it’s my view that a more flexible approach is preferable and more effective as you would have read in CFS Unravelled.
Really sorry to hear that you are so sick in the moment. Your experience of these progressive lower points certainly reflects my own personal experience.
You make a really good point about how knowledge of the possibility of relapse can be helpful – I do my best to help people understand how and why this is the case. In the same breath – I always steer them towards a positive expectation, whilst encouraging them to learn from their experience and live life in a way that maximises the liklihood of a positive outcome.
Interestingly, the amount of people that recover and don’t follow my advice and go out and do marathan events and such like to prove a point seems quite signficant. I am not a fan of that sort of thing but concede that it happens in robust recoveries.
I am so happy for you Dan! I love hearing about people who have recovered.
The CFS specialist who diagnosed me told me that I would get well in 10 years. I believed him. Later my parents went to talk to him and he told them I would get well in 5 years. Thanks a lot, Doc! ha ha!
That was 25 years ago. But I still believe that I personally can get totally well from this illness. I couldn’t say anything about whether other people can or can’t.
HAHA – doesn’t exactly instil confidence does it!
I am always inspired by people that can maintain such a positive outlook in the face of adversity – congratulations.
I myself must admit I was unable to do that as early as 4 years in after progressive worsening and countless attempts at treatments.
Hope you make your breakthrough soon.
I found this frustrating. Here we have a blog about the importance of prognosis in our recovery. To this day I still tell myself I am getting well if I have a few good hours or days.
Then we have the typical ‘everyone has to find their path to health’ based on root causes. But we need to submit our email or buy books to find out more, presumably for marketing but not sure? How about YouTube?
There is no way one patient can unravel the mysteries of this illness. You can find things here and there that make life more bearable but prentending you’ve personally unraveled the mystery by curing the gut or ANS in just the right balanced way for you is the same exact talk I heard on forums and believed when I first got ill. There are many thousands of combinations of factors and feedbacks that could be making us ill and to suggest we heal the gut or fix ANS is not useful.
Nothing wrong with anecdotal stories. I always like to hear from patients about specific things that make them better, just what is deliberately avoided here. Grand theories or vague pronouncements have been offered thousands of times before and they mostly sound just like this one.
Still love the site and what Cort is doing though. It is s great resource.
Thank You. I’ve been investigating this program via the free teaching-videos and I’m convinced it’s worth looking into. I’ve also been messaging a bit with Dan and with Cort which adds to my confidence in Dan and the program. I’ve ordered the book and if I resonate with it I’m going to try Dan’s program. After all, it’s risk-free with his generous refund offer. I have to add that it bugs the crap out of me when people attack someone for charging money for their services. Just sayin!
Thanks for the comment Judy – nice to have some sense injected into the conversation! Two comments like this in one day – someone must have noticed my pain in dealing with this nasty sort of stuff!
There are many good perspectives here. I fully agree with the point that a prognosis is of scarce value when it comes to ME. A matter of fact, knowing the lack of knowledge, attitudes, the heterogeneity and so on. So anyone with ME getting some kind of prognosis, shouId be cautious and open minded. What one not should do, especially if given the not so uplifting negative prognosis, is letting that have any impact on mental approach. Maybe easier said than done, but hopefully manageable for most.
ME will bring on the hardest challenges you can imagine in many aspects, but I find it a little disturbing that one seems to downscale the strength of human beings. Knowing people in general, myself and other patients, knowing basic psychology, it can not be underestimated how people and patients do find mental strength, sound positive approaches to make things work in a best possible way, as a main rule. It is relentless hard work, but there are always options, always some kind of solution for keeping up. There are exceptions here like everywhere else. That seems reasonably considering the many though challenges, but still – this is not that main rule. I just don’t agree to, therefore dislike the picture of people almost giving up and in, even if given a bad prognosis.That is just not true! So in my opinion it is to simple to draw a broad picture, that many patients direct or indirect have the wrong mindset as a result of a prognosis and that this limit they’re possibilities of recovery/remission. That said, a positive and good approach will not necessarily cure anything.
What we ought to highlight and try to learn much more of and from, is the many complex and important factors of the disease itself and the advices given/not given in the initial phase, that can and will influence both in the short and long run. We need to gather such information in a proper way, then systemize it, so we can learn from similarities and differences. We must have respect for each unique anecdote with so many complex factors and be careful jumping to conclusion that one thing that works for one patient will work for another patient. And we do need to ask some questions, questions that some will find hard. Just like others will find it hard, when someone recovered or “recovered” prescribes a one size fits all-approach.
I like to share a fresh example from Norway that seems relevant in this context. I don’t know exactly how widespread this method is, but my impression is that it is some kind of phenomenon mainly in UK and Norway. Here we are dealing with the «mysterious» mythical and controversial Lightning process. The process itself shall not be described in detail. Then there is a fact that many patients have turned to this when facing little else, so to speak. It was marked aggressively as treatment, specifically addressed at ME for years, but such marking was banned by UK authorities in 2012. The rhetorics is somewhat changed and the promoters now call it a « training program”. But this is very random, and the fact is it is in reality still marked as a treatment. A doctor even stated that a few anecdotes regarding recovery is evidence both for cause and treatment? So there is a lot to work with here..
So what usually happens with LP, is that you get media to run some miraculous anecdotes once in a while. Sometimes it even fuels a kind of « debate”, read: always ending with professors blatantly hitting each other heads and little else. Maybe not that helpful for patients, more than anything confusing.
It is quite hard to label what LP is, but developed and trademarked by osteopath Phil Parker. The strong, near religious promoters of the method sometimes calls it CBT, another form of CBT, a method with elements from CBT and so on. Add a little NLP, a little basic psychology, a little information on ANS and how the brain works and, voila! A subtile mix, a la carte. Thats fine, but a major problem with the references to CBT, is that doctors who may not know CBT and in no way what LP is all about, near automatically get the impression that it is the same as CBT, which its not. The value of CBT among doctors will differ quite extensively, but what they may have in common, is that they find that it is quite safe to use. The latter can be discussed, but the point here, is that LP differs a lot on one essential point. The major problem with LP is the idea is that you shall not in anyway listen to your body/symptoms. Because you’re not actually sick, you are doing ME. Let LP overrun everything and wash your brain. That of course is exactly what makes LP so harmful and so dangerous for so many. I wont speculate in cause(s) for ME, but lets just hypotetically assume that this is quite the opposite of what is needed for a subgroup under the umbrella. So the important knowledge of this is, that it is not just «to try it». It is not only the two possible outcomes, either positive effect or no effect. Many patients have experienced the harmful effect of LP. CBT may be of no effect, could also cause some harm, but very limited compared to LP
What many find extremely worrying and unethical, is that the promoters simply close they’re eyes, not acknowledging that many patients have been seriously harmed. Instead LP is oversold to everybody, not adressing the problems, not the nuances, in no way interested in a meaningful dialogue. One thing is mot medically trained people overselling for money, that is more than bad enough, but doctors doing this, well I have no words. The lowest of the low. The last important note on LP has much to do with not underestimating patients. Promoters make a solid distinction between patients that work with thoughts and mental approaches/strategies and those who supposedly not do that. Then they link this fundamental misjudgment to recovery and lack of recovery. It is ugly. It is sad, and many patients are devastatingly hurt.
Ooh, the irony of it. After finishing the 3 day course, our instructor gave us a thing she called an «anchor», meaning that this thing should always remind us of LP, always knowing we had «the method». So, what did we get, the three of us at the course? A plastic duck. Quack, quack!
Wow Peter – huge comment!
Well, what you say is very measured and sensible indeed. I also continue to be amazed at how people cope and look forward positively despite any negative prognosis or personal experience.
Whilst I speak to people with ME/CFS/Fibromyalgia every day, I actually feel that I have really learned something from your comment (and some other similar comments criticizing my article constructively)
For one, it made me realise how poorly I handled my own experience with so many years of being ill. I am actually getting a little emotional typing this as I look back. Because I had totally given up hope of the possibility of recovery and resigned myself to a life of suffering, I had completely abandoned any treatments or efforts to get well. I had become too jaded by false promises that “xyz treatment would fix the real xyz problem” and give me back my health – which of course never happened.
But clearly, people are managing a more balanced and constructive outlook despite evidence to the contrary. I have actually seen this before with people that recovered after being sick for several decades and had still been looking for answer despite so many years, but I always thought they were the exception.
So whilst a positive outlook (or prognosis) won’t cure anything, it sure makes life a lot easier to cope with!
I also totally agree with your comments about the ‘one size fits all approach’ or ‘this worked for me so it will work for everyone’ mentality. That’s just not how the illness works and is the whole drive behind my book CFS Unravelled. That’s why I am reluctant for going into details of what I did and how I recovered (as criticised for above) – because I am not advocating people to do exactly what I did.
I don’t want to comment too much about LP, for one never having seen it in detail am not in a position to do so.
However, whilst I know of people that have found it very helpful for their recovery, I don’t feel comfortable with any approach that suggests someone with ME/CFS/Fibromyalgia ‘isn’t actually sick’ if that’s what they actually say. That sort of thinking is likely to lead to people pushing themselves beyond what is sound which we all know can lead to terrible set-backs and flare-ups that can have devastating consequences.
Also, like you said, it’s important to recognise that different things work for different people – it pains me to hear of people that try a treatment and come out feeling they have failed or it’s their fault for not recovering. I see this sometimes and really feel strongly that people have to be self-nurturing and kind to themselves and not take negative ideas like that on board.
Thanks again for your thoughtful comment.
Dan
I just wanted to say I think it is pretty great that you are taking the time to respond to everyone’s comments and write thoughtful responses. I think that speaks very well of you on a personal level. It isn’t often you see this kind of interaction, even if you take an opposing viewpoint, you are keeping an open mind and responding with careful caring responses. It is inspiring that you recovered and your optimism is nice and non judgemental. Thank you.
Hi Jessica,
Thank you for acknowledging that.
I don’t know anything about your method Dan, so I can only make a couple of general points, aimed at contributing to the thinking here.
I got my diagnosis of ME in 2011 in the UK. No particular prognosis ;like many I went through a process of believing for years that I would recover, and searching for medical help to do so, until fairly recently coming to accept that I’m getting worse. Despite this,and the loss of so much of my former life, for the most part, I maintain a good attitude.
The commonly accepted view is that thinking positively can affect disease progression. However, Anil Van Der Zee recently conducted a meta study of all scientific studies about this and found no evidence for this.
So whilst a positivity is essential in helping me live with the disease, it’s not going to make me better.
Another point is that, of course, there is a difference between cfs and ME. Doctors have not been exact in defining and diagnosing which illness some of us have. Some doctors don’t seem to recognise any difference, but in fact if I had cfs I would have a much better chance of getting better as it does not seem to have the degenerative or progressive aspect that ME has.
Hi Dan
I’m delighted to say that I have improved considerably since my initial diagnosis in 2015, though my life still has to be pretty limited. I find, for me, the best thing is just to live in the moment- if I’m fatigued, I know it is temporary, and if I am well I try to enjoy it. I try not to look either back or forward. I do try lots of things to try to improve- some of them may be what has helped, but I have no control me so will never know for sure. I think that straining for a cure could lead to disappointment, and resigning yourself could lead to depression. So I go my middle way 🙂
Great to hear you have enjoyed considerable improvements, Janet.
The middle ground sure takes a lot less emotional energy – perhaps a very smart strategy! Have seen many people that recover first ‘accept’ the illness, although they don’t resign themselves to it. This appears to be very powerful to help them cope and continue to move forward.
My doctor understood right away that my autonomic nervous system was affected by the flu I had. ANS dysfunction secondary to my Chronic Fatigue Syndrome has persisted in my case for 27 years, unabated. I have been lucky enough to have (never full) remission periods of greater or lesser extent after the first 9 awful years.
My treatment has always focused on ANS support and recovery. My prognosis is a faint memory now and has changed many times depending on the doctor. It’s well known that damage to the nerves of the ANS is often irreversible. Mine certainly seems to be irreversible. I have damage to my brain and nervous system.
Many other chronic diseases have ANS dysfunction. Do you believe the prognosis for diabetes and Parkinson’s disease affects recovery ability? Your focus on prognosis has a blaming the victim feel to it. We saw this with cancer, with MS. I’ve read your book. I’m glad what you experienced was healed by your strict regimen. I don’t think treating ANS dysfunction is a cure for CFS/ME, but it does help, of course, as it does in any number of other chronic diseases.
Hi Diane
It’s my view that ANS dysfunction being central explains how the symptoms are generated as well as how people get sick and why the illness perpetuated. I understand not everyone will see these connections in the same way. My focus is on this syndrome, so I won’t comment on other diseases.
Don’t understand how this “blame” comment arises – of course I am not blaming people for being ill. I get the sense that people speak of ‘blame’ because I speak of the possibility of recovery and focus on empowering people – perhaps some find that affronting!?
Hi Dan,
Thanks for all of the work you are doing. What I find interesting is that at age I had severe symptoms of CFS at age 30 (brain fog, fatigue, pain, GI issues, candida) At age 34 my symptoms went away without explaination. The only change was I only worked two days a week for those four years (when I could actually work a full two days) and I fell in love with my husband. For eight years I had no symptoms. Then my husband died and my symptoms came back. This time I didn’t have any GI issues, only severe fatigue and pain. The dr’s thought I had depression and I tried lot of psychiatric medicine, but that didn’t help. Finally five years ago I tried Lyrica and that improved my energy to the point I could work part time again. I still have pain when I do “too” much. I am going to read your books and see what you have to say. Thanks again. Amy
Hi Amy
I appreciate the kudos – the work has its ups and downs sometimes 🙂
So sorry to hear about your upsetting experience and loss of your husband.
Yes the depression label when we have CFS is very upsetting (a little depressing really – excuse the pun). Hope that CFS Unravelled helps you make the connections of this confusing experience.
Hi Dan-
While I was reading I felt like it was me writing about myself. I too was ‘sick’ for 7 years. I used to write about ME/CFS/FM/OI/MCS because I thought it would help people but I realized that most of the community are extremely negative and are happy being in their anger filled world where everyone hurts them. I used to be just like everyone (and you) but, like you, I found my way to healing. Your story is my story. I think it’s brave of you to write about it and interview others who have achieved success. It’s not easy to sit in the hot seat and take the criticism, especially when most people never read the entirety of what you write. I have made it a point in life to (no matter how painful) read every word that a person writes before commenting or coming to a conclusion about what their point is. I found many times that what I thought a person was getting at was not that at all, and if I hadn’t read the whole article I would have gone away with the wrong ideas. I can tell everyone who has read this far 😉 on my comment what worked for me, if you want to hear it.
Thanks again for writing and sharing 🙂
Hi Lynne
Thank you for your wonderful comment. Yes it happens a lot, one of many reasons why the many people that recover ‘go underground’.
Appreciate the comment about ‘being brave’ – sometimes it’s tough to deal with the harsh responses.
It’s confusing when I get so many heartfelt thanks from people including partners of people with the syndrome, and then some of these harsh negative comments at the same time. Difficult to reconcile the difference at times.
Would love to share your recovery story on https://cfsunravelled.com/cfs-fibro-recovery-stories/ if you like.
Dear Dan
I look forward to reading your blog. Quick question: my main symptoms at present are extremely sensitive trigger points, lumpiness (Fibrositis) and associated brain disruption. I sleep thanks to drugs. Did you use any trigger point detector devices or electrostimulation from an acupoint device or magnets.
Leslet
Hi Lesley,
No, I have no personal experience with these – never used them.
I have Dan’s book and there are useful things in it. However, I had a very positive prognosis at my diagnosis. I was only 22 and my very kind Consultant told me that because I was young I would be well within the year. I completely believed that and continued every year for at least the first 10 years to think by summer I would be well. I had known people with ME who had recovered, one friend had recovered after only a year, another after about 15 years. I have tried treatments that also promised me a good prognosis, and I completely believed they would work. Here I am 25 years later and more ill than ever, despite always believing it would get better and trying many different ways to get better. Apart from different treatments I have over the years completely changed my diet and obviously eat very healthily, nothing processed etc, also eliminated foods I have intolerances to. I practice good sleep hygiene, I pace, I practice relaxations, I am constantly trying to move forward yet I continue to deteriorate. Now, unfortunately, when I read books like this I am often left feeling it is somehow my fault that I have not recovered and there is a link I am missing and if only I can find it I will be well I am just not trying hard enough. It is hard to deal with, but I keep trying to find the answers. I have never just sat back and believed there is nothing I can do to improve things, but I have never had improvement, only deterioration!
Thanks for your comment.
Well I think it’s great you were given hope instead of all gloom and doom, and knowing others that recovered as well, certainly helps with that.
But it’s pretty bitter/sweet (or perhaps just bitter) when it doesn’t actually happen – totally get how frustrated you would be feeling.
I really feel this self-blame thing isn’t helpful, even though of course I can understand how it happens. It’s true that I see some people simply ‘not trying hard enough’ as you put it – which is why people that start from a lower point with higher motivations sometimes do much better.
However, I have to say that probably a bigger problem is really not doing the right strategies, or not doing them in the right way, not doing them effectively. Also, it’s key to address the right dysfunctions.
This, of course, isn’t always easy, because the illness is very complex and there are sometimes these secondary dysfunctions that become very difficult to identify and overcome. In my experience, the best way is often the recovery from the syndrome as a whole, but when you have some severe dysfunctions, they can stop that from happening – the classic chicken or the egg scenario. The best way to deal with this in my view is the multilateral approach and treating secondary dysfunction as best as possible. But I have found that with some of them, particularly neurological dysfunctions, such treatment simply isn’t available.
Michelle, I guess this is a long roundabout way of me saying “IT’S NOT YOUR FAULT”. Simply ‘trying harder’ may not have gotten you there anyway. But I would always encourage people never to give up. Build your resources, your wellness and your motivation and then perhaps make another concerted push for recovery when the timing feels right, and you have a plan of exactly what you need to do to try to get there. In my experience, sometimes the very things that didn’t work in the past, can help later when things have changed and as part of a multilateral approach.
Glad you found CFS Unravelled helpful.
I looked into purchasing this book and saw right off the bat that undergoing these treatments must be supervised by a knowledgeable doctor. I don’t have that. I cannot work because I am too sick. I live supported by my husband working part time and with minimum wage. I am on medicaid so my choices of doctors are limited. I did go to an “expert” on CFS for 18 months before the federal govt. shut her down for bottoming out her patient’s vit. D levels to a dangerous degree. I cannot buy organic food and supplements so I am right back where I started: Resigning myself to the fact that I will probably always be ill and the best I can do is to find a way to cope and stay out of post-exertional malaise (which I am in right now). I’ve been too sick to work for 6 years. I was denied disability by judge that said I had no proof that I was even ill. The end. It is what it is.
Thanks Dan for writing about your experience and what you have learned. I don’t understand why so many people get their noses out of joint because a man tells his story and shares what he studied and put into practice — in a book that is less than $10 in electronic form. Dan, I was skeptical of you too, but you have been promoting this approach for many years, and you’re not charging $8000 a year for advice like a certain CFS doctor. (A doctor I respect but find his treatments somewhat dubious, having followed the winding path of his typical prescriptions over the years.) Less than ten bucks for Dan’s work. I’m going to buy it. If it is unhelpful, it will be one of the smallest useless expenses I have incurred in 30 years of illness.
Good luck Eric! Please report back 🙂
Thanks for your supportive comment Eric. ?