When I first published my book and started my website, one of the most common bits of feedback I received was “This guy really understands what it’s like to have ME/CFS/Fibromyalgia”. Some of those responses were quite emotional!
Well, having been ill with it for nearly 7 years, of course I understood. And I, like everyone else, felt that amazing relief and validation when I first spoke to other people with the illness, even though it was very late in my journey, about 6-7 years after I first got ill.
There is something amazing in hearing someone else experience the same frustrations, the same injustices as you have. Because no matter how much you try to explain what you are going through, other people simply don’t truly understand. They cannot understand, because their whole frame of reference is on a completely different plane! What they describe as exhaustion or pain would often be like relief for us.
And nobody gets what’s it’s like to suffer day in day out, week in week out. Nobody gets how this affects you when months turns into years, NOBODY, probably not even YOU! That’s something I only realised long after recovering!
This was highlighted to me again recently, when I interviewed someone that I coached to recovery after 15 years of illness. We looked at some footage of himself discussing his illness and experience a couple years earlier, and he started to cry. When I asked him why, he explained how he could see the suffering he had been experiencing, he could see how he was trying to hold it all together back then.
But of course we feel we know how much we suffer. After all, we experience it every day, right? Well, I personally don’t think most people really realise the real extent of it, whilst they are still sick. Let me explain what I mean by sharing some of my own experience.
During my years with ME/CFS/Fibromyalgia, like most people, I tried my best to live some sort of normal life. And so on my ‘good’ days (when I was not experiencing a flare up), I would try to do the normal things that other people do with their families. One of these was going to a local amusement park SeaWorld, where the kids could enjoy the animals and the rides.
It was about a year after I had recovered, I had been very busy with work and doing some heavy duty work around the house, when we got tickets to visit SeaWorld again. I was very sore and tired that day, LIKE A NORMAL PERSON, due to the physical work around the house. As we spent our day having fun, doing all the usual things, it felt like it was my first time there. We just had such a great time with the kids, making every little experience like some grand adventure.
But as I walked that familiar ground of the park, including the queues, I suddenly realised the true extent of my suffering all those years. Because even though I was tired and sore from all the work around the house, the whole thing was of course completely easy. Easy to walk through the park, to line up, to enjoy! Easy to sit down, stand up, to check the map, everything was easy.
Sitting on a particular park bench, I suddenly felt a sense of déjà vu. I connected strongly with the emotions and feelings I had experienced all those times I visited in my sick years and as I did so, I felt a wave of emotion flooding over me. I realised just how hard it had been to do anything, even during my ‘good’ days. It was only the contrast of the ease of doing things now, that showed me the true depth of my difficulties during those years.
It was a strange feeling, as I kind of felt very sorry for ‘that person’, that former me who had dragged themselves around, looking every moment for some respite. “Where I can I sit down?” “What can I lean against?”. “What should I eat or drink to get through the day?” “How much longer until we go?” “How far do I have to walk next?”
There was little joy in any of that, I was suffering so severely by simply being out of the house. I realized that I had been so distracted by trying to hold things together back then, that by simply trying to cope all those years, I lost my frame of reference for what was reasonable.
I realized that I had pushed myself beyond anything that anybody would have thought was reasonable. If a healthy person suddenly experienced what I was experiencing back then, they would not drag themselves on trying to be normal, but would have lied down and maybe called an ambulance.
The question came up “Why did I push so hard?” I had worked so hard! I had tried so hard to maintain some semblance of normality – and it had cost me so much!
The realization of what I had gone through really hit home. I knew it was difficult in those years, but suddenly I had a whole new perspective about them and I felt a deep sense of grief about myself for having to suffer through all that.
This realisation is not unique to me, I have seen it in many other people that recovered who were sick for longer periods of time.
I realized that if I could go back to when I was ill and speak to myself, I would say – “don’t try so hard Dan”. I would say “it’s OK not to be able to do things” – “it’s OK to just rest”.
I realized though, that I had given up any hope of significant improvement or recovery; that I thought that this, as bad as it was, was as good as it was going to get. If this was as good as it was going to get, if nothing was going to change, then I was going to do my best, even if it cost me greatly, to lead as much of a normal life as I could. The pull to maintain any semblance of normalcy was terribly strong.
It’s not just the physical stress. It’s also the mental stress; the worrying about how it will turn out; the fear that I might get worse or might never get better – the fear that I might be this way for the rest of my life.
If I had known that recovery was possible, though, if I had known that there was an end in sight, then perhaps I would have given myself more of a break. Like when you have the flu, you just take a time out.
But when you think there is no end in sight – you just push on don’t you? And as you do so, over time, many (if not all) of us simply lose perspective of what normal is. We get so focused on holding it together and doing what we can and trying to get well, that we never get the opportunity to step back and look at our experience objectively. Most of the people I have spoken to, seem to only realize the full extent of their experience after they have recovered.
But if you really feel like you are in the doldrums right now, then perhaps your best step forward is first to find a way to feel a little better, a little more hope and to feel a little more able to cope. And reaching out to a counselor or friend may be your first step.
Having lived with the illness for years myself and having seen others get stuck in these awful low places, I wrote a little book called Discover Hope : 34 Steps To Find Hope and To Cope with Chronic Fatigue Syndrome & Fibromyalgia. It’s a short easy to read book that could help you find a more positive place from which you can hopefully start taking action to improve your health and your life. So if you’re feeling a bit low, then hopefully it can give you a little boost and help you change your perspective.
The book can be read on any computer device using the kindle reading apps, and is available for free from time to time from Amazon (currently free from 12th May 16 to 14th May 16, you can check the link to confirm the next free dates).
Simply check my website here for more details on how to get it.
Every now and then I will get a glimpse of reality and realise the enormity/abnormality of my condition – you do get so used to it, so preoccupied with coping or trying to get better that you can forget the absurdity that is this condition.
And yes, only past/present sufferers understand. If I ever recover, I will look back at myself and feel very sorry for that person as its truly a miserable way to live.
For the first 8 years of my illness, I pushed like you did – I had young children, if I didn’t push, they missed out on things. I recall visiting a science museum with them once, I was so bone tired I also sat down at every opportunity, looked for something to lean on, couldn’t wait for the whole experience to end – such relief when the last exhibit had been seen/played with. No enjoyment whatsoever, cannot engage with the kids or enjoy their fun.
After 8 years my condition got worse and weakness became profound – I am now now unable to walk for more than a few steps. This is even harder to understand – like on some level I could understand the fatigue – even though it was not ‘normal’ fatigue – but when your legs just won’t walk or feel like two rubber bands attached to your hips – that sometimes creeps up on me in a ‘wtf??’ Kind of fashion. The rest of the time I just try to ‘manage’ it.
I know it’s unhealthy to hold resentment against those that don’t even try to understand it but I have found that nearly all of my relationships with family and friends has disintegrated. I have found the lack of understanding so hurtful that I feel I’m better off without them.
My MIL is the best for comments that make me go “arrrrghhhhh” inside – like “so what have you been doing this week?” Ummmm….same as the last few years – nothing, just being sick. I once had a better day and I went to sit and watch the kids at a trampoline fun centre and she said “you should get out more often – it would be good for you!”. So yeah – try to avoid that angst as much as I can!
🙂
Hi Jane
Thank you so much for sharing your experience. I must say I can relate to it much more than I wished I could!
It reminds me a bit of the frog slowing cooking in the pot. I kept adjusting my ‘normal’ and then one-day, when I had a flare up, I suddenly realised that I could not move. Suddenly I was stuck in bed, not even able to speak. WTF indeed! How can you manage that?
I always encourage others to simply forgive, because the frustration is one more burden that we really don’t need. In the end, it’s probably quite likely that if the roles were reversed, we wouldn’t get it either. Unless someone has actually experienced this illness, they simply can’t understand, they have no frame of reference relevant to our experience.
My advice to anyone still seeking recovery from the illness, is to be as selfish as possible. I know that gets hard as a parent, but when it comes to all else, frankly I don’t see anything more important than being gentle with yourself.
Very interesting. I am curious as to how you recovered, how you became ‘normal’ again. ?
Hi Jacquie – please see my response to Gloria below: https://www.healthrising.org/blog/2016/05/12/nobody-knows-chronic-fatigue-syndrome-fibromyalgia-really-like-probably-not-even/#comment-717238 🙂
“I have found the lack of understanding so hurtful that I feel better off without them”
I can totally relate to this sentence. I find it so hard to relate to ‘normal’ healthy people, including family, that it is just easier to live a solitary life. I find it tiring talking to anyone for an hour or two. It’s just too hard to concentrate on what someone is saying and making an intelligent response. The rare times I socialise I prefer it to be without someone who can carry most of the conversation. I prefer email as I can read and/or answer when I feel up to it.
Fortunately I have other serious health conditions like severe obstructive Hypertrophic Cardiomyopathy and can use that as as excuse (which people are more likely to understand). The word Cardiomyopathy brings a shift in understanding and compassion. It brings an instant insight to the deep fatigue, breathlessness and chest pain I experience with exertion. My 2 back surgeries allow me to ask someone to bend over and pick someone up for me (without further explanation).
I think the hardest part is the waxing and waning of symptoms. People think because you can be active for the afternoon means you are faking your fatigue and cognitive function on other days/weeks/months. They don’t see the next day after exertion and/or a social activity when you’re so tired you can’t think straight and have to rest all day(s).
Jane, my Mother (who I suspect had CFS/FM for over 45 years) used to say exactly the same type of comment as your MIL. She came from a generation who just shut up and got on with life, regardless of chronic pain and fatigue. I do remember when I was about 14, (I’m now 62), and my Mother was hospitalised for tests as (apparently) the doctors thought she had early MS. In hindsight, and she never spoke about it (or the seeking of medical advice), that might have been the start of her lifelong battle with pain, muscle weakness and other symptoms.
Still, she showed no sympathy or understanding of my own health battles. She just said (on my umpteenth episode of pain/debilitating fatigue), “go out with your friends and have a drink and laugh, you’ll soon forget about your pain.”
No one can comprehend what it’s like to be in pain for 36 years (17 years of that with other serious debilitating chronic ill health/surgeries recoveries), unless they have experienced long-term pain and symptoms similar to yourself.
It’s only on the 2-3 pain-free days each year that I really truly remember what it was like to feel normal.
Thanks for sharing Vicki. I hear where you are coming from,especially about he waxing and wanning. It seems like you almost have to hide when you feel better, otherwise people just don’t get it when you can’t do anything a few days later – that might sound silly to some, but just another crazy aspect of having the illness that I think many of us can relate to.
Hi Vicki. Thanks for your comment, and I’m sorry to hear of your ongoing health issues. I am very lucky in that (for now!) I don’t have pain, just unrelenting fatigue and weakness so severe I can only shuffle around the house and spend most of my life on the couch or on the bed. I can imagine having daily pain would bring in another element of despair.
My MIL is about 65, but actually very old-fashioned in many ways so perhaps partly her insensitivity is a generation thing! My own mother who passed away, was a compassionate woman in her older years, but a pretty insensitive mother when I was a child. I wonder if on some level your mother felt guilt that she had passed on her health problems to you? Who knows.
I totally relate to the part about feeling ok one day and giving the impression to others you are like that all the time!! It’s so bang on. If I have a good day I’m actually REALLY reluctant to share with someone because of that very reason – it seems to confirm to them that you are getting better!!
X:)
Not only a pain generator, FM had a way of causing mental catastrophizing. Three days ago I had a hard fall on my driveway; my dog bolted as I held the leash. I skidded sideways on my hip/thigh. At 61, I have a ‘soup’ of physical issues, so I don’t know: is the pain a fracture, nerve pain, or just good old invisible FM? An X-ray is impossible, my husband away on business, a dog to care for–I have no friends, relatives or neighbor’s nearby, what if I was admitted to the hospital? See where your brain can take you? I mentioned only my increased pain to my spouse via phone, his response was “That’s great– telling me this while I’m 1,000 miles away for an important meeting, just more stress.” Add to this the process of moving in 3 weeks, 500 miles away for his job. Hard to believe 13 years ago I ran rings around other people.
I’ve often wondered about a connection between my health decline and the moldy cellar where I do my laundry; the 12 years have coincided with my health decline. Have others developed FM or CFS/ME after constant mold exposure?
Hi Sally
I have come across people who have been triggered into the illness by mould exposure (it’s rarely just one thing, but this certainly was a major part). You might appreciate Evelyn’s Fibromyalgia recovery interview – she discusses how she had MASSIVE mould exposure.
I have been working towards the final trigger for FM all of my ( now log life ). Then 1985 injured whilst nursing it was triggered. The pain in the part of my spine never went.
in the early days the fatigue wasnt bad and I could have better days. Now I no longer have a life FM & ME have stolen it.
Also have developed many other health problems.
I am house bound mostly in bed and in chronic unbearable pain.
Can barely walk, cant stand and have many falls.
I get so annoyed when I read that someone is cured. I have yet to meet someone who has recovered!
I am 74 now, getting closer to the inevitable. Not a lot to look forward to.
If someone has just been DX with FM and reads about someone
getting better it gives them false hope.
All I can say is anyone who claims to get over FM probably was wrongly DX in the first time!
Hi Shirley, it’s rough sometimes, and I guess we all have to make the most of every dya.
I don’t like the word ‘cured’ myself, have even written a blog about why. And it’s a shame that you haven’t met others that recovered. I must admit that I never heard of anyone either when I was sick, so I had given up and just wanted to manage it as best as I could. That’s why one of the first things I did was start collecting interviews of people that recovered, capturing their onset, symptoms and frustrations so we can all see if fair dinkum!
I used to agree with you about false hope, but nowadays I wonder if such a thing actually exists. Regarding people being wrongly diagnosed when they recovered from ME/CFS/Fibromyalgia, I hear that a lot (in fact it was the first point of discussion in my most recent interview where he shared how he hears this all the time). But I think it might be more of an emotional conclusion than a logical one. Who knows, it’s one I might have made if I came across any during my years of illness.
Jane, the same thing has happened with me. I do not have one single person who even tries to understand. And when I happen to here from a family member, their first question is always “What are you doing?” I just want to scream. This illness can take almost everything away from whoever gets it. For years I kept trying. But regardless of how hard I try, the only thing I can do is lie here 99 percent of the time. Every single person I know believes I should get up and do more. ???????
Linda – it can make one a wee bit bitter, can’t it? When my illness took a turn for the worst about 4 years ago, I was distraught, bedridden, unable to care for myself or my two very young children. My husband had to come home from work to feed me, rearranged his work hours to do school runs etc. I was the boss of the household ;). I did everything, all the doing and all the thinking, so when I was not available, it was a real shock for my husband and family. So – to have no-one at all…I can actually imagine exactly how that would feel – and it’s not good. I am very lucky to have my husband, although he doesn’t completely ‘get it’, he gets it to a degree that no one else does and he knows my limitations and he doesn’t think it’s psychological. I have completely cut ties with my sister, whom, when I became bedridden offered the supportive words “Jane! It’s psychosomatic!!” – this is after years of being exhausted and unwell. I know Dan says we should be forgiving of those that don’t understand – well, I don’t know….I’m a naturally empathic person and there’s no way I would be so insensitive. I would be the one googling and looking for answers or doing whatever I could do to help. But I’m also not interested in forgiving because unless these people are actually going to be helpful, I can’t have them in my life anyway – there’s no energy left after I put on my cheery face for my children. I honestly feel I’m better off without them and here’s another misery-guts attitude – I hate hearing about their lives and what they’ve been up to!! It makes me grieve even more for my past active life! X:)
Jane – it sure can make us feel bitter and jaded. And I think it’s perfectly reasonable to feel like that.
Indeed, I think some people are really insensitive and not all this behaviour can be explained away by “they simply can’t understand because they have not experienced it”. Sometimes it’s really obvious that someone is suffering and needing help, there is little excuse for this kind of thing.
So I totally understand where you come from about not being forgiving. The thing is, forgiving doesn’t mean forgetting. And of course we need to always consider whether we want to have such people back in our lives – sometimes we are better of without them. As I recovered and reconnected with the world, I recongised some of these people were simply the wrong type of people to have around me. But others, were simply ignorant, not realising or wanting to be unkind. They simply couldn’t get it. I think we are good judges at drawing the distinction between the two and should always go with our gut instinct.
Regarding the forgiving, I want to make an IMPORTANT distinction. Forgiving them is NOT for them, it is to benefit yourself!!! That bitterness and anger and frustration we carry when we are wronged like that, it hurts us more than them – they often don’t give a hoot. 🙂 XX
Resentment is taking poison and waiting for the other person to die. Forgiveness is the antidote.
Aye, 33yrs an countin, understand completely, even her hubby of 32yrs doesn’t understand… feel yu’re feelings.
This brought up some emotions for me too Dan! Especially as I sit here on my lunch break, feeling a little tired at the end of a 5-day working week. Something I couldn’t have dreamt of 6 months ago. Thank you for writing it.
Thanks for sharing and commenting Anna. Yes, it’s a strange feeling living back in the normal world when we have felt that this wouldn’t be available to us again – a little surreal for most of us!
Jacquie says: Very interesting. I am curious as to how you recovered, how you became ‘normal’ again.
Yes Jacquie, this seems to be the million dollar question – so why isn’t Dan answering it?
Ellie Strand suggests he is holding out for payment to his program.
Cort, why are you allowing this person to peddle his wares (and consequently hold our hopes hostage) on your site? It’s not in keeping with the spirit of this community. While it’s doubtful Dan holds any real piece to this puzzle, I could hardly imagine Ron Davis withholding information until we purchase his program….
SMH
I have communicated with Dan twice. Both times he was sincere and generous in his replies. I am so thankful for his commitment to the CFS community through the free information on his website, his thoughtfully written articles (and personal, warm replies to individuals), the invaluable recovery videos he shares, etc.
I feel fully supported by this genuinely lovely person.
Thanks for the kind comment Susan. ?
I don’t think most people realize how much people with ME/CFS and FM yearn to have a normal life and how much to the detriment of their health they try to have one. They just see the lack of activity.
Yes indeed. And over time, others seem to think it’s OK that you become that person that just doesn’t participate – they kind of compartmentalise you like that. This really ends up causing more isolation. We want to enjoy life as much as possible, just like the next person!
One of the things that struck me most about Dan’s piece was the idea how much better things would be, how much easier and how much less struggle there would be if I could take the stance that it was all going to be all right?
(Recognizing that being “all right” doesn’t necessarily mean being healthy.)
I like that distinction Cort. People often talk about acceptance and it can be quite a negative concept for some. But acceptance doesn’t necessarily mean we give up or don’t strive for a better tomorrow.
You are right about accepting what you have now as your normal, but not giving up on the possibility of being better in the future. In the beginning I was constantly angry over what I had lost in the way of health and career, but have learned to accept and work with this new normal and be hopeful for the future. If someone could look into the future and told me it was never going to improve that would have a different response!
I am always AMAZED at people’s excellent attitude with the illness. I love how you mention being ‘hopeful for the future’, that really shows how hope is so important. I personally had lost all hope, somewhere around 4 years into the illness I think, and frankly it turned me into a very cranky and angry little man!(I say little because I spent a lot of time stooped over, especially in the mornings) It’s OK to jest about it now, but at the time, those years were no laughing matter! Of course, I had never heard of anyone recovering back then, I think sharing the different stories is so important which is why I have focussed on that since I recovered.
The life event I have that most relates to this is at the end of one school year when I knew I was ill but kept going in to teach because the holidays were close and I was not ‘much’ worse than normal. It turns out I had bronchitis! In the first week of the holidays I had an urgent job of digging to be done in my garden and decided there was no reason I could not undertake it with bronchitis. After all, I was used to forcing myself to go in and teach day after day while feeling nearly as ill.
A few times a year the class would go on school excursions. I would go back to school afterwards and continue to work, weary though I was. That was my normal pattern. Then I noticed that other teachers would go home exhausted straight after a school excursion. They knew how to recognise and name those feelings; I did not.
I have said since then that we are so used to working through the weariness that we do not recognise illness for what it is.
Such great insight Diane – it makes me laugh when people suggest that those with ME/CFS/Fibromyalgia are weak – in truth, my experience with the people that I have met, is that it’s quite the opposite, often to our detriment. Thanks for sharing! 🙂
Yes, it is frustrating, too, when people don’t consider your character and talents. Hello, do you even know me!? It hurts when they think after everything I do for others that I would make up this disease or that I am just lazy. Their assumptions seriously keep me from healing and idk how to keep going through this alone.
My experience with the CFS diagnosis was to go through all of the stages of grief and arrive at acceptance of my new normal. Thankfully most of my friends didn’t leave and my family is still speaking to me! All of the life routines have changed and people who didn’t like it were kicked to the curb and not dealt with any longer. Harsh but effective in dealing with negative influences. I shop at little markets not big box stores so there is less chance of passing out. Amazon prime is a lifesaver and much if what I need is covered to my house. Housekeeping us minimal and my daughter in-law sometimes comes over to help. I can’t work any more in my 40 year profession of nursing but can still give advice. My grandchildren rarely saw me until 2 years ago and now we see each other often. When doors are closed Windows are opened.
Sorry for the typos. My phone is evil.
I was also a RN and finally had to go on disability 15 years ago. I was very active in sports but since then all those friends/acquaintances have fallen by the wayside. I did go through a grieving process the 2nd spring of my illness-when I should have been hiking and playing baseball. There are times I still grieve but my world now are my kids and grandkids. They always put a smile on my face.
Thank you Katie! I am on private disability right now pending SSDI with licensure in many states due to working in case management. The decision had to be made to drop most of them and just keep the ones closest to home until next renewal, then it will probably be the rest. That has been really hard!! The silver lining is spending more time with family and friends. Leaving stress from work behind has been pretty joyful actually.
, Well stated.I also was a nurse who could no longer WORK way too long and hard in my profession.Truely many doors , personal time, time for grandkids are now all within my grasp as I manage my new life.Its all a matter of adjusting with a positive. Perspective
I’m currently going through Dan’s REWIRE program. I started on March 2nd, when I was to the point that if this didn’t work I was through with even trying. I felt like a someone in WW I going over the trenches for another futile attempt to gain some ground!
About 10 weeks later, I’m seeing real progress. I can do things that before would have worn me out, I have much less pain and much more enthusiasm (something that I thought I’d never feel again) for life. I’m not cured yet, but I understand that it took over a decade of being ill to reach where I was at in March. It won’t take even a quarter of that time to recover fully.
I am so very grateful for Dan’s efforts: first to figure it all out, write the book and later develop the online course. He trained and worked as a physicist before becoming ill. I really think it took someone outside of medicine looking at our disease from a macro point of view, and without preconceptions or vested interests, to put it all together.
Im so excited you are on the road to recovery Ellie, that’s so exciting! It’s a bumpy road but know there are others who have traveled it before you, and who have been able to say they are fully recovered. Congratulations on putting the effort in and taking that first step, it was the hardest one, and it only gets better from here! All the best with your new-found life.
My obvious question of course is how did you manage to get well??
Did it just happen one day or did you take something that helped you?
Hi Gloria – well as you know, there isn’t a ‘magic cure’ for ME/CFS/Fibromyaliga (I tried all those until I completely gave up on recovery and became chronically cynical & a little overskeptical). My recovery was resulted from a multi-lateral approach (all the usual things, but with the addition of brain training as I came to believe that this nervous system illness is specifically in the ANS – see my other blog for details – https://www.healthrising.org/blog/2013/02/24/a-single-cause-for-chronic-fatigue-syndrome-core-system/) You can see my website for more details including some videos where I explain all this in detail.
Thank you, I will check it out.
Thank you for your reply as well. I am so glad someone was able to beat this!
It is one thing to cope, but how did you recover? What made the difference for your health to go from deep symptoms to recovery? I have tried many different avenues (short of prescription meds which I will not take) and have basically just had to learn to cope…for 22 years. Please share any insights that might help….thanks!
Hi Marti – see my response to Gloria above! https://www.healthrising.org/blog/2016/05/12/nobody-knows-chronic-fatigue-syndrome-fibromyalgia-really-like-probably-not-even/#comment-717238
I was born with FM; my mother had it all of her life as well; that means that I have suffered for 74 years. I had some hope that things could get better with age and possibly after menopause…the opposite happened. I think those of us with this abomination manage by creating parallel lives.
I worked for doctors for over ten years, raised a family and cared for three children alone in a state that was not home much of the time because my husband’s job took him onto the road for five days each week for years. I am still here.
My greatest unhappiness is toward the medical profession. It is so difficult to fathom the attitudes that still exist because they were taught wrong. Now, when asked who my doctor is, I say that “I don’t have one”. If I get a laceration, bad burn or broken bone, I will take myself to the ER, other than that, I am tired of the hurt imposed over and over again.
I am so happy for you that you found relief and answers. Me, I am just waiting for the end. The thing that gets me through is music because when I sit down to play one of my instruments, I can get lost for a short while and ignore the pain and the terrible way I feel.
I so wish that answers could be found to erase this misery that is so bad that people can not imagine what it is like…unless they share it with you for real…and do I really want to wish that on another human being?
Maybe a few doctors so they can finally understand…God forgive me for that, please.
Well Judy, I have met many people that the illness for decades, and many that got sick as children, but nothing quite like your story! I do understand how you feel, it’s bad enough being ill and then to have to fight this other battle on top of things – it just isn’t right. Well done for finding joys in life and being positive where possible.
I was diagnosed 2 years ago and it seems like a lifetime. Unfortunately, I am trying to accept the CFS diagnosis myself. I am a type A+++ personality and dealing with this is really a challenge.
HOW do you get to any sort of “recovery” stage? I feel like I am digressing versus improving.
There are many differing opinions on recovery, it’s sadly quite a controversial subject. The real problem is that there isn’t one all-encompassing single cure or strategy that works for everyone – people recover in all manner of ways. The WHO long ago recognised the illness as being neurological in nature, but whilst I agree with this (my views are here: https://www.healthrising.org/blog/2013/02/24/a-single-cause-for-chronic-fatigue-syndrome-core-system/), we still need to address many of the secondary dysfunctions as it all ties back together. There are some video resources on my websites, check them out – hopefully they will give you some answers.
Vickie, two years is forever to be sick like this, withou a doubt.
It became shorter, two years, the day I caught myself referring to that time of my life as “the early years”. Now it has been 26 years, and I get steadily worse. In the early years I saw so many doctors, did so many medical tests to be sure of the diagnosis, that there was nothing treatable. Now, I had a horrid experience getting a new primary care physician — doc of 25 years retired without giving me a referral. It is worse with doctors in my area, “never saw a patient with this before”. Well, likely he did but did not recognize it, or was disbelieving. I needed 2 Rx written, and what an ordeal to make a connection. He accepted me only because he recognized the names of doctors I saw early on. Not for the person in front of him. And in a 45 min session, he did no physical exam himself. All that time to make my case as if in court. Good thing I brought my healthy sister with me. Hard to stay calm with responses, such a mountain to climb to show my worthiness as a patient. I left him with the IOM report, wonder if he reads something aimed at him.
I cannot imagine being cured, do not expect it, but would love to stop the decline, or somehow regain some muscle strength, with someone knowledgeable to guide me. Clearly not the new PCP. not sure if I am strong enough to travel to out of state doctor as I once did. Would a local yoga instructor coming to my place be a help?
I hope the course of your disease is not like mine, and you find ways to remain more functional, less subject to the devastating post exertional exhaustion/destruction that defines my life, physically & cognitively.
Hi Sarah, I think many of us have had some ‘mixed’ experiences in those appointments. Yes, having an advocate there really helps!
Sarah:
For the past 2.5 years I have seen more than 15 specialities….at Mayo Clinic and outside of Mayo. The “best specialty” I have seen is my PCP who is an internal medicine MD. She hit my diagnosis on the head the first day she saw me. There are no naturapaths where I live so the “best prescription” has been: (1) don’t overstress; (2) rest; (3) relax; and, (4) don’t overdo it. So far that has gotten me 25lbs heavier; more exhausted than ever; and, in a declining position.
Every now and then I have a “good week” where I am less exhausted, less “wired”, and more positive. However, that only ends with the “beginning “flu symptoms” and rapidly downgrading to bedridden and feeling very helpless. I cannot stand the “helpless” part.
I cannot even image your life story. Without “SOME” type of clinical help/support, keeping positive and trying to find a solution is a great challenge. I truly hope and pray that you will find some relief and support!
I’ve rarely heard a better explanation why we need more treatment options.
WOW! This truly hits home with me. I dream of the day I can say I feel normal. But until then I find myself “forgetting”just how abnormal I really am until I try to do something that most “normal”people can do and realize that it’s like constantly walking on a moving record, going around and around getting no where but exhausting myself. A simple task of driving an hour to my vet’s office, taking the dog in and talking to the people exhausts me as if I worked a 12 hour day with the flu. I’m constantly apologizing for inabilities to my husband. I’m lucky that I’m married to an angel who has been here through thick or thin. It wasn’t much after we first got married 15 years ago that I started to be ill, I worked long hours for 8 years, ignoring my body and health issues until my body just gave in and I was forced to leave and never look back. Everyone I’m sure knows the frustration of doctor’s who don’t understand, co workers, employers, insurance companies that just don’t get it. It can be a lonely, scary and frustrating world. I’m better in that aspect but I do want my life back. Not to be young, just to be normal. I want to be able to plant my flowers, tend to the bird feeders. Simple things in life.
The things other people take for granted! For me it was the same, so much angst around any activity you would try. When I first recovered, I still did that occassionally (although of course not so strongly) when I went to do things, like going on a boat trip or something like that. After a while, I realised there was no need for it. Then over time, as the years past, I realised that the whole thing simply didn’t even enter my consciouness. But I never forget what it was like all those years – I don’t think anybody does! I think finding ways of getting a little joy back in our lives is important, hope you plant some flowers soon! 🙂
Unfortunately I did the same thing…..pushed myself despite the pain and fatigue. I figured I could “push my way through it” and come out the winner. It didn’t work and I wound up on SSD. That was 25 yrs ago. I hate it when doctors think that antidepressants are the answer. If my pain were to go away, I think I would be OK. It seems to have started when I was working as a medical transcriptionist and sitting all day. The pain in my leg muscles was so bad! I believe my fatigue is related to lower back and the leg pain it causes, but chronic pain can become “centralized” and that’s a problem. I Googled Dr Forest Tennant and found info on that issue which was very informative.
Yes, this resonates with me too. Cort and others following this blog will recall a lot of comments about how I have been slowly recovering from FM with a multidisciplinary approach based on insights from research about the condition.
The way I have been putting it, is that “the better I get, the worse I realize I WAS”.
And I get it completely, Dan, about “being selfish”. We exist in a historically Christian culture where the best advice is to “not be self-occupied”, “rise above it”, all that kind of thing. But so far, the only way I have found to reduce the debilitation, includes intense occupation with “what is going on in my body” – and getting the pace right. The self-discipline that is necessary, is bad enough, without having to also cope with a pre-conditioned guilt complex about “self-occupation”.
If you try the moralistic approach of “rising above it” and “thinking of others” and keeping on pushing yourself for their sake, your debilitation increases. Ultimately you are trapped.
And it is not just a culture of moralizing that is the problem – it is also secular medicine adopting the “it’s all in the mind” tactic when they can’t explain the “physical”. Worse, even when there have been hundreds of studies that identify physical aspects, most of the people on the front line of medicine are not getting the memo. The fact that the doctors say “it’s all in the mind” just boosts the ego of the all-knowing moralizers and makes a hell of many personal relationships.
Yes, I can certainly relate to people breaking down and crying, over the memories.
Hi Phil, your comments really resonate with me.
I still get SOOOO annoyed about the all-in-mind comments, people just have no idea. There are endless dysfunction and tests you can do to prove or measure these – it just add insult to injury.
Even more frustrating is that sometimes people think that I am suggesting “it’s all in your head” – it’s like that darned silliness will never leave me, even years after being recovered!
Regarding the selfishness, the thing I try to help people realise is that it is false economy. After all, when you are well there is so much more you can do and give. But the thing is, whilst we think it’s not possible for us, those words mean very little.
I wrestled with this quite a bit myself, because during my recovery, despite my confidence in the explanation, despite my confidence that recovery was possible and that I was on the right path, there was a part of me that still thought I had no chance. If I had heard of others recovering back then, perhaps it would have been easier. But I see people on my site who see all the different recovery stories, and they still think it’s not possible for them. And I get that, because I even thought it wasn’t possible WHEN I was recovering – THAT MAKES NO SENSE! It takes a while for the mind to catch up with the body, into the illness, and out of it!
I’ll be honest — I’m a little frustrated by Dan’s lack of specificity. I scoured his website and watched his videos and was still unable to find the solutions he speaks of. All of his suggestions are very vague.
His assessment of how I feel while ill is spot on but I agree that he seems to have a magic potion that he’s not sharing. How did he get better? I know people do get better and most of the time it’s if it’s caught earlier. I didn’t really see solutions in this article, just his expression of how you forget what normal is.
In my opinion, Dan is not giving away the “secret” to his and my own recovery because he needs to recoup the costs of making the program available online to a worldwide audience. That said, the total cost for the 40+ videos and supplementary material was less than I spent each month just on supplements…and he offers a money-back guarantee.
When I initially signed up, I did it so I could say, “Nothing ever works, but it is NOT all in my head!” and get my money back. (Something I never got from other programs I tried.) No one was more surprised when it began to work less than 3 weeks into it.
I am sorry about the lack of specificity, and understand where you are coming from. I tried to explain this in better detail in the free intro videos of the ANS REWIRE program.
The real issue is that it isn’t some ‘secret sauce’. It’s about YOUR ‘secret sauce’. In my view there will never be a single all encompassing ‘cure’, because whilst I firmly believe we all have the same root dysfunction, it is triggered differently and expresses itself differntly also. And we also experience different secondary dysfunctions. That’s why we need a multi-lateral and tailored approach to address our secondary dysfunctions and inlcude brain training to normalise the nervous system function.
I could go into a lot more detail, and am happy to answer any questions that are not answered by the ANS REWIRE intro videos for you personally, so feel free to contact me via the site. But this blog wasn’t really about my program, but rather about helping people recognise just how difficult their daily live is in the hope that you find ways of being kinder to yourself and more nurturing.
“But this blog wasn’t really about my program”
Oh come on Dan, you know very well that doing this ‘blog’ would lead to questions of how you recovered, which would lead to your ‘ANS REWIRE’ program, which you have turned into a business.
Nothing wrong with that, but I think people would be more receptive if you were a little more straightforward.
In that regard, I’d like to ask how is your retraining program different from the Gupta, Lightning Process, or DNRS programs?
Please be specific.
Whilst I don’t like the attacking and criticism, and I’m grateful to Dan for his book and work – I think that’s a fair comment and question from Kelly.
Kelly
I felt my blog was straightforward. I wanted to make a point that I felt most of us don’t really recognise and it seems to have resonated with many people, but of course not everyone. In my experience, people recognising this point I make in this blog is often a turning point in their recovery efforts, which is why I hoped you would find it useful.
So this blog wasn’t about my recovery or my explanation and views on the pathogenisis of the illness.
Of course one might be curious about such things if they don’t know about me, but they can simply read and find out about these things easily, as I have already blogged about my recovery and about my thoughts regarding the pathogenisis of the illness before. I have created many videos, and given many many interviews over the years, so these things are no secret or ‘news’. I hope that you can appreciate that of course I cannot start every blog by first telling my life story for people who don’t know me. If someone wants to know these things, they can just look them up and read for themselves.
Of course, I do understand and appreciate interest in how people recover (if I had known anyone like that when I was sick, I would have wanted to know also). However, my view is that my recovery only 1 of 1,000s of recoveries, and only some of what I did will likely be relevant to you. And I have always felt that WHY people recover and WHY the different strategies work (and not work for others) is much more important than WHAT someone has done. This is why my book wasn’t really about my recovery.
But in any case, my website shares many recovery stories – my own was the first: http://cfsunravelled.com/dan-neuffers-cfs-recovery-story/ But if you are looking for a breakthrough single cure in my story (or in any other recovery story), then you might be in for a surprise. I explain more about how recoveries happen and how people get sick in the free introductory portion of the ANS REWIRE program. If you are interested in details as you suggest, you can of course look at the website, look at the program description, watch the free introductory videos and read the FAQs and email me with any specific additional questions should all those things not answer your questions.(I think you will find I have been quite thorough)
Of course I cannot comment on other programs, only on my own. So not only cannot I not be ‘specific’ as you request, but I cannot even be general! Those comparisons should be made by people who have experience in both. And to be fair, probably recent experience, otherwise they may be comparing ANS REWIRE to an old version of another program, which may have been improved since they did it.
My program is quite new and was only launched a couple of months ago, so it will take a while for people to become more familiar with it. What I can tell you is that some people who have some experience with other programs have given me some feedback. They told me for some parts of my program, other programs also address such triggers and have some similar technique. They have told me that they like ANS REWIRE program and techniques and suggested that they are simple and quick and easy to use. They also like being able to customise these techniques.
In time, some people will undoubtedly share their experience with ANS REWIRE with others and likely someone will make a more detailed comparison. In any case, I expect that some people will prefer ANS REWIRE, and some people will prefer other programs/approaches. If nothing else, I think you need to be drawn to the presenter/mentor and like their style, so we are all different.
So I have given you a detailed answer to avoid you suggesting that I am deflecting or something like that, as per your previous comment about not being straightforward. I felt this blog made an important point which is why I wrote it, and that these other discussions are a bit off topic and would be more appropriate elsewhere.
What a load of crap! This again is placing the blame of illness on the individual because of inappropriate handling of “STRESS”. It’s like saying someone with MS had “hysterical paralysis” before the advent of the MRI. He says with a person with CFS that’s bedridden is too heavily “parasympathetic”, this is just another snake oil salesman because we don’t have a diagnosis and treatment!
I don’t know how Dan got well but as I remember Dan had a classic onset – an bug that felled him. I don’t see how stress could have played a role in that.
After the fact it’s very clear to me that my stress response system as well as other systems are not working well at all…I’m too jacked up – too wired AND tired – for that not to be true…
I’m certainly not deconditioned, though.
Jacquie says: Very interesting. I am curious as to how you recovered, how you became ‘normal’ again.
Yes Jacquie, this seems to be the million dollar question – so why isn’t Dan answering it?
Ellie Strand suggests he is holding out for payment to his program.
Cort, why are you allowing this person to peddle his wares (and consequently hold our hopes hostage) on your site? It’s not in keeping with the spirit of this community. While it’s doubtful Dan holds any real piece to this puzzle, I could hardly imagine Ron Davis withholding information until we purchase his program….
SMH
Cort, how can you say you don’t know how Dan got well? You’ve done articles with him for the last three years. You’re no doubt very familiar with his protocol.
We’re not that dumb.
Hi Kelly
I personally don’t think your tone is appropriate and that it’s somewhat disrespectful to suggest Cort is not speaking honestly. I will answer your other comment.
Hi Gregory – well, I’m not sure what about the blog you think is ‘crap’, perhaps your experience has been different.
And you misunderstood what I am saying here and elsewhere, let me clarify:
Regarding ‘placing the blame of illness on the individual because of inappropriate handling of “STRESS”’, I don’t know how you came to that conclusion. Regardless, I’ll just say for the record that I strongly disagree that we are to blame for the illness, or that it is because we as individuals handle stress inappropriately (presumably you mean mental stress).
The fact that our nervous system reacts inappropriately to stressors, whilst being central to the explanation I originally put out, actually is old hat too. When I ‘pieced together’ this explanation, I didn’t realise that other people had come to similar conclusions many years (decades) before me, but that there was ample research to proove this. In fact, WHO has long ago identified ME/CFS as a neurological illness and the college of rheumatology has also stated that Fibromyalgia is a central sensitisation issue. There are endless studies showing issues with heart rate variability, POTS etc etc – I am sure Cort can direct you to many articles on the site.
But none of that means that we are to blame, or that we are not dealing with our stressful lives. I don’t know what your life has been like with the illness, but frankly, my life only got REALLY stressful after I was sick for a long time. And frankly, I think I did a pretty good job handling all that most of the time, although admittadly, in my later years there were times I really struggled, and times that simply couldn’t be coped with.
Regarding being too heavily sympathetic when we are bed-ridden, well, can’t imagine why you would disagree with that. But it’s important to recognise that there are many many things going on besides just a parasympathetic response (after all, if that was the case, we would just need a few crisp slaps to wake us up right? – no such luck). Again the research has long proven how we have severe hormonal dysfunctions and also cellular dysfunction. And on top of that, of course our immune system is shot, so oftne all kinds of infections pile on top of all that as if it isn’t enough already.
Hope that clears things up.
PS: No snake oil or other magic potion that works will ever be invented in my view!
Dan,
I want to thank you. I have had CFS for 10 years now and my worst symptom has been anxiety and feeling wired, to the point of causing severe pain. My symptoms started with intense episodes of anxiety that would last months at a time. It is impossible to explain how torturous this was. I have always thought my nervous system to be at the core of my being sick. Basically, when my nervous system is calmed, I start to get better and when I get overstimulated, which happens easily, I get worse. I have been to many doctors and specialists but you are the first, that I have come across, to seriously address the nervous system In treatment. I just came from a CFS specialist in N.C. who told me he did not think I would ever recover, that for me this would be s lifetime chronic illness. I know I can recover if I can find the right ways to treat myself. What you speakabout is very encouraging! It is hard to believe what little attention is given to the role of the nervous system in CFS.
Hi Karin,
Thank you for your comment. Your experience is so common and I think anyone with CFS can relate to it.
It’s sad to hear that you are being told such a negative prognosis. It’s interesting that I hear this quite a lot, but in the last year or so, I have also heard doctors setting a more positive expectation of around 6-12 months (I was quite suprised by that at first, pleasantly so). Of course, it varies, some recover quickly, some take years and some never recover, but in my experience, they all take action in order to recover, it never just happens, and what is required is often quite different.
When I published CFS Unravelled, there was some critizism (similar to what you see some of the blog comments here), but when I released ANS REWIRE recently, someone critizied me saying ” ‘ME/CFS/Fibromyalgia is a neurological illness’ – tell us something we don’t know” It seems we have come full circle! But if the WHO classifies it as a neurological illness, then I would think it would make sense that reasearch and treatments be focussed on this, instead of the endless list of dysfunctions we experience.
I am glad you appreciate the focus.
I like this article. Having CFS myself, but getting better, I specially like this part :
“I realized that if I could go back to when I was ill and speak to myself, I would say – “don’t try so hard Dan”. I would say “it’s OK not to be able to do things” – “it’s OK to just rest”.
Yes, there is things to do to get better, but you have to go so gradually… and there is things not to do, like pushing yourself at the wrong moments. If I could go back when I was at my worse, I would tell myself the same : “Don’t try so hard”. You are feeling so bad that it is normal you want to get better. But, to speak for myself, I was trying way too hard… Sometimes, I think that the best thing you can do is nothing at all. It is an act of faith.
Glad to hear you are doing better Manon.
Indeed, knowing when to stretch ourselves and when not to push is an important aspect. The whole effort of trying to recover often adds to our stress also.
I appreciate the positive comment! 🙂
Thank you for your website; all the interviews of people free from CFS gave me hope when I was bedridden, suffering so much day after day, and facing doubt about if I would ever get better one day. My biggest fear was to stay as sick as I was. Hope is so important… it gives you the strenght to keep going and believing that if others made it, so you can make it too. I am not at the end of my journey, but I see results now and I know recovery is possible.
You are welcome Manon – I wish I had them when I was ill those years – glad they have lifted you and given you direction! 🙂
I have to agree with the snake oil comments. The longer I’m sick the more annoyed I am with the sort of tactics Dan is taking. I’m more annoyed with people like Dan than I am with people’s insensitive comments because I feel like Dan is taking advantage of the fact that this is a poorly defined illness and the sense of desperation to get better (or have answers). He isn’t providing any information on how he improved except to refer to his book. Which costs money. Most of us can’t afford medical care. He’s obviously more interested in making a buck off our backs than being of any help whatsoever. Worse, it seems like this is another Gupta like gimmick.
I am sorry about your frustration Ryan. Not sure if you had thorough look, I have given many interviews including detailed accounts of what I did to recover. But it has never been my focus, because you will find that even if you copy exactly what someone else did to recover, it may not work for you. The real key is finding our own journey.
If you like details on what people do to recover, you can actually listen to all the recovery interviews on the website, where people go into a great lot of detail on how they recovered. You will see that they differ as I suggested above.
Hope you find something that works for you.
Dan, I’m sorry you are bring criticised, though I know that is the nature of putting anything to do with CFS out there. It is such an incredibly frustrating and misunderstood illness, it is easy to see how people can become disillusioned and defensive when someone else speaks about it…ironically because of exactly what you spoke about in your post-because no one understands it!
I credit Dan with me being able to take my first step towards recovery. I had been sick for 2 years (stemming from a mild case of poorly treated pneumonia) and was rapidly spiralling downwards in terms of both my physical and emotional condition. I was losing hope of ever having any semblance of normal life and I was grieving-frustrated, sad, hopeless, guilty for putting my family through this…you name it. I stumbled across Dan’s book CFS unravelled and decided ‘why not?’; I too felt like understanding this illness myself was key to getting through life with it-perhaps it would help answer ‘why me?’. Whilst reading the book was invaluable in making sense of my illness, it was his videos with people who had recovered that really proved the turning point. Being too unwell one day to read another page, I decided to pick one video at random, and it was with someone who had recovered in 9 months after being sick for 8 years. 9 months!! That was music to my ears! This was in October last year (2015) when Dan was still in the process of developing his program, so I took the course that worked for this person in the video. That was in early December. Immediately I could socialise, travel, and exercise, all without testing. In January I returned to work 3 days per week, and gradually built up my days until last month when I started back full time. I am back at the gym, I have travelled for work, I have attended conferences & made presentations to strangers in that time…all with a ‘normal’ amount of fatigue. I have also gone through a breakup with my fiancé through that time, which has obviously been one of the hardest challenges of my life; but if I can beat CFS, I can do ANYTHING. And I do understand Dan’s motivation for wanting to help others who are still suffering-his motivation is altruistic. And if nothing else he offers evidence and HOPE to people who are VERY sick, apparently medically inexplicably so, CAN get better. CAN lead a normal life. Please try and take the positives from this. If his program is not for you, that’s okay and I wish you all the best in your journey to recovery. But please don’t be negative about someone who is genuinely helping people change their lives and recover from this awful illness. Negativity won’t help anyone beat CFS, only positivity, hope and support will do that.
Thanks for your kind and positive comments, and congratulations on your recovery. You have done very well to recover and glad you got through your personal challenges and stayed recovered!
It’s never nice being attacked or accused, but I know how frustrated people feel, and frankly, we get ‘sold’ so many treatments by all kinds of practitioners, there comes a point where we just can’t hear any more.
This is the first CFS forum I have signed up to. Over the years, I have occasionally looked at the Phoenix website for specific discussions, usually on specific supplements. I try to stay away as for me, I get too upset reading about how long people have been ill. Emotionally, I am not strong and still full of fear about what has happened to my life, even after 10 years of it. I am surprised by the attack on Dan – and disappointed. I have only bought his book – it was cheap, it was informative. I believe his programme isn’t expensive and at least someone is trying to help us?!! Of course he needs to make a living out of it. You can’t expect him to devote all these hours to the cause, and somehow manage to support his family with a full time occupation. He’s not, as far as I’m aware, selling any snake oils – it’s just advice. Give him a break – please! I hear so many people complain that there’s not enough awareness or help out there and yet here’s someone doing just that and he’s being shot down!
For what it’s worth – I gave up on the medical profession a long time ago – I turned to psychics and medical intuitives (oh I know this is going to have stream coming out of people’s ears!) for answers. For years I’ve done this and whilst it’s not helped me to get better, it has offered ‘food for thought’ – for me, my CFS (bedridden for 8 months at a time, currently housebound and disabled, not worked for 10 years) has worsened over the years, had 3 distinct stages and now I’m kind of in a stand-still stage – not getting worse, maybe getting slightly better every YEAR. But I didn’t have a virus onset (though tests show EBV and low virus-fighting cells), I lived a life of total excess – I was anorexic at 14, then severely bulimic (every day, several times a day bingeing and vomiting) until I was 30. I worked full time, I lived overseas, I binge drank on weekends, I was always the office fool at staff parties – getting horribly drunk. I smoked cigarettes and on several occasions took recreational drugs and danced for 3 days on end without sleep. My life was full of dramas, mostly self-created, some not (mother passing, awful childhood), intense relationships, painful breakups, financial struggles, basically the problem child of my family. I also worried incessantly. At 30, it all changed. I was engaged and pregnant with my first child. I immediately stopped ALL of the above – except the worrying – the fear and worrying has never left. I started to eat organic foods. But that’s when my fatigue started! I felt okay BEFORE, despite my lifestyle. Anyway – I had no idea then what that fatigue would turn into.
Getting back to the clairvoyants – yes they get lots wrong but all have said that stress got me here – starting with ‘stress’ from nutritional deficiencies, then adrenal fatigue, then hormone imbalance and nervous system exhaustion. I’ve been told I will be well one day and even if this is not true, hearing it gives me the will to keep trying. I’ve been told I’m ‘detoxing’, on a massive clearing/cleansing journey – but I know that will annoy the crap out of a lot of people and it certainly does not seem to apply to all those with CFS, especially the 20/30 year ill people – so I do still have doubt and sometimes think it’s bullcrap but other times I try to believe it to give me hope. I’ve also been told that it’s also due to emotional stress – deep-seated emotional stuff and low self esteem (NOT in my head, but the emotional issues affecting me physically – you need to believe in the whole mind/body/emotional connection, which I know is hard, even I’m not there yet).
So – I do think CFS can be caused by stress but stress is just anything that stresses your body – and like Dan says, it’s different for everybody – the straw that breaks the camels back might be different for everybody – therefore the magic pill might be different for everybody – depending on your major stressor? I have actually met a woman who after 25 years of illness, got well using the Gupta program – prior to that she mediated and did yoga for years – so you would think her ‘stress levels’ would have been ok…well she said ‘yes but I wasn’t training my brain’. For her, that was enough, she didn’t need to treat secondary dysfunctions. Perhaps the yoga and meditation helped her in that way – she was ill but not ‘disabled’ as such. I tried Gupta – well, I looked at it and it didn’t feel it was for me but I was probably being lazy – I might revisit it in the future. I know it alone won’t help because I definitely do need help with the secondary dysfunctions like gut, thyroid, endocrine etc.
Anyway – please give Dan a break – he understands where we are at, he’s been there and he’s offering help to those that might benefit from it.
I truly hope each and everyone of us can find our cure, and enjoy life to the fullest. Xx
Thank you for sharing your journey Jane. I often see people who recover make more than just a health transformation, so you seeking answers and maybe redefining how you approach life makes perfect sense of course. I am sure you have heard this often if you have listened to any of the recovery interviews on my site.
I appreciate the kudos also! xx
I’ve come across several people who tried mind/body stuff for years and made some progress and then they found something that worked. I can’t imagine that that something was very different from what they had tried before…I think it was just time…
I think you right Cort, it’s about being ready and making enough inroads to then finally be able to make a breakthrough.
Have seen that many times where people come back, sometimes a year later and then say “I get it, I just couldn’t see it back then”.
I guess my question is this: everything I’ve been reading has been about how we believe this is a medical disease and us as patients, a handful of doctors and researches are desperate for funding for research for a diagnosis and cure, to put it simply. We dispise the psychosomatic rhetoric. So how CAN any kind of mind-body work, anything other than a hard medical cure addressing the immune system, nueroinflamation, etc cure anyone with true ME/CFS FM? This is where my confusion and cynicism comes from. Until I am offered any scientific diagnosis/cure for medical disease I think it’s all snake oil.
Dear Sandy, all of us have the opportunity to get bitter and cynical. I have been there myself and it got me nowhere. You maybe haven’t read the same research I have, but to me the ANS is the key. All the other symptoms are the logical result of being in “fight or flight”. Everything shuts down when we are in that state, never meant to be for long. It’s been 30 years for me and after getting worse and worse, I started to get that I had to work on it in a different way. I meditate when my energy is good enough and have lightened up on myself because the pressure I was putting on myself was not doing me any good. I can’t wait around for the AMA to figure this out. Some of them have. Some are working in the viruses and gut problems and all the confusion about what really causes it comes from all that. I, personally, cannot wait around for the AMA to get their shit together. My doc knows it as a spiritual problem, as do I, bottom line. This may sound airy fairy to you, but it’s my truth. Hang on to the negativity and you will be stuck with this forever. I cannot afford Dan’s wonderful program at all, but I have been following his work for a couple of years now, and I am getting better by changing my attitude. That’s not in a pill or treatment. I do plenty of that too, but it my main focus is on ME and my approach to this. There are so many of us and it hurts me to hear so many people being mean to Dan. There isn’t a kinder, or more giving man in the field. Yeah, Gupta didn’t work for me either, but let’s not lose our sense of decency because we are suffering. it just causes more separation, and accomplishes nothing but to perpetuate the negativity which this disease feeds on. warmly, joya skye
Hi Sandy – look, I know how you feel in a way. A few comments I can make are this.
First of all, of course this is a real illness. We are sick of suggestions that we’re making it up and frankly there is so much medical research and proof about the dysfunctions (just look around the articles on health rising), that it doesn’t even deserve the attention of defending that position.
But the word psychosomatic is totally misunderstood by most people. I have written about this many times. Psychosomatic doesn’t mean that you want to be ill or that the illness isn’t real. I would be surprised if you don’t recognise that ME/CFS/FMS has strong psychosomatic elements! Because I have never met anyone with genuine ME/CFS/FMS that doesn’t find themselves experience a flare up if they experience strong psychological stress of some type, either mental (such as stimulation) or emotional.
The next thing to recognise is that the illness isn’t purely psychosomatic. Just like heart attacks are not purely psychosomatic. A person’s heart attack can be a psychosomatic event (gets upset, scared or shocked and has a heart-attack), but more often than not, although not always, there is likely to be underlying heart disease, and this was just a psychosomatic trigger. And in ME/CFS/FMS, the way it starts sometimes is not psychosomatic at all, and sometimes there are many physical perpetuating factors rather than psychological ones – we are all different – but it’s all the same to the nervous system.
A ‘cure’ the way most people see it, in my opinion will never come about. But if you have a neurological dysfunction, then what we understand about brain plasticity now does allow us to create positive change through brain training techniques. So some decades ago, when people had a stroke, it was considered by the medical community to cause permanent insurmountable damage. Now, virtually every stroke victim undergoes brain training, usually with a physiotherapist. But ME/CFS/FMS is not as simple as a stroke and much more complex and dynamic. This is because the dysfunction expresses itself in numerous ways and even seeds secondary dysfunctions. And so it all gets confusing and a bit in the too hard basket.
Think about it, if someone who had a stroke can learn to walk again using mind/body therapy, then is it really a stretch to think it can have a positive impact on other neurological illnesses? I would imagine if your doctor had referred you to mind/body therapy for ME/CFS/FMS and explained why it was relevant, it might have been easier to accept and understand.
Dan, thank you for the reply. You helped clear up some of the confusion for me. I can see where you’re coming from and I can see where it might help. When people start throwing around the word “cure” though, I’m looking for something completely different. I’m looking for something that cites the underlying disease. In your example of the heart attack, I’m looking for a cure, or at least a halt to the heart disease. No matter what you do to the person to keep them from having the heart attack, if you don’t cure our at least stop the heart disease, the heart attack is inevitable. At the most, it’s delaying the inevitable.
EXACTLY!!! That has been my whole mission for day one! Only treating symptoms, that makes no sense to me. I don’t think it is logical, I don’t think it is scientific – and frankly, my experience like pretty much everyone elses was that it doesn’t tend to work. (and when it does, it’s usually in combination, which again is explained by the ANS dysfunction explanation)
That’s why I have worked so hard to have people focus on the ANS dysfunction, which in my view is the only thing that explains everything, including how people get ill in different ways, how they recovery in different ways, and how all the symptoms and dysfunctions get created. For people who have POTS, this is already widely accepted as being the cause, but of course POTS is not really a symptom, it’s a syndrome. And in my view, which I get the sense is increasingly shared in the medical community also, these are all 1 illness – POTS, ME, CFS, Fibromyalgia, CFIDS, MCS, EMHS and a few others also.
I created a short summmary of my view about this in a short series of videos that you can see here. Hope it makes sense for you somewhere along the line, if you don’t agree, that’s fine – but I hope the discussion has helped you move forward in some way anyway.
Anyway, I think we went off track from the actual blog a long time ago! 🙂
Just yesterday I had a big emotional release during yoga about the reality of how much I cope trying to be normal. (Fortunately I have a wonderful instructor and classmates who supported me through it). With 3 brain originating conditions (fibro, essential tremor & tinnitus), each with the constant reminder of “no cure” in order to stay sane, I have to shelve how bad it is in order to function. Yet I realized that I also have to allow some time to process the reality of it emotionally. Interestingly, I also heard a voice inside remind me that I am a Fibro Warrior, how strong I am every day just tor try & have a good life. I use a multi-disciplinary approach, and next week am starting Neurofeedback to try and help the anxiety & depression. I just downloaded your ebook from Kindle and look forward to reading it Dan.
Hi Lianne
I remember trying yoga during my recovery and having a breakdown afterwards because I couldn’t keep up with the elderly lady in the wheelchair (no joke, she was in a wheelchair – not a tough class, so having to bail out due to not being able to do it wasn’t easy!) So I had my own ’emotional release’, perhaps not as therapeutic as yours!
Anyhow, Ihope you enjoy Discover Hope.
By the way, neurofeedback can be very helpful, you might enjoy Lynn’s recovery interview, she used it a lot and went on to become a practiioner – http://cfsunravelled.com/lynn-shares-her-thoughts-on-how-to-recover-from-fibromyalgia-based-on-her-recovery/
I cried at the end of my first gentle yoga class, because between being out of shape & my Essential Tremor I looked like a mixmaster doing Downward Dog! I felt so inept & weak! Inside was screaming “This is not who I am!!” The owner (another instructor) convinced me to do Gentle Aerial Yoga. Glad I trusted her, for the aerial silks provide support while doing modified yoga stretches. And she allows me to set my own pace. It’s helping me regain strength. Your ebook was great, I look forward to seeing the video you recommended & more on your page. Thanks!
Lianne – you have a way with words – I know it’s emotional and upsetting, but the mixmaster comment made me laugh out loud – LOL.
Probably because I can so relate to it, that would have been me if I could have gotten that far. I had to leave the class because I couldn’t hold my arms up to the side for warrior pose, it doesn’t get much easier than that you would think. (the lady in the wheelchair was able to do it) And because it was during my recovery, my whole confidence came crumbling down – “had I kidded myself yet once more?”.
Never saw aerial yoga before – looks interesting and a great option for people with ME/CFS/Fibromyalgia. I think it would have helped if something held my arms up. 🙂
Sorry Dan FM beng classed as a syndrome means there are so many hurdles to overcome.
I have never ” given in” to my illness, never! I know there are people who recover sometimes from ME.
As a fighter I have accepted my illness and now cope with it, having learnt to live with it.
Unfortunately I have a scliosis and spina bifida occulta holding me back, so to speak.If one condition doesnt zap me another will.Advancing old age doesnt help.
Remember we are all different!
Indeed the illness is a SYNDROME, even this basic fact is often lost, making our plight harder – like we have “so many illnesses”, there must be something wrong with us! I still hear some people talking about Fibromyalgia like it’s a symptom of just having pain.
You have done well never to give up (better than me, I gave up a few years in when nothing had worked). Yes we are all different, and having additional health complications doesn’t help. We just have to try to be as comfortable as we can. 🙂
Upon reading this article, I am filled with mixed emotions, but mostly the usual sadness, lack of hope and despair. I often times question myself: maybe I could try harder, maybe I am just giving up. Dan’s description of going to Seaworld and constantly looking for a place to rest, to lean, just waiting for it to be over with is what really resonated with me. My biggest heart ache is trying my best to put a smile on my face and not hold anyone back. As we’re packing to take a quick overnight trip to the coast tomorrow, all I can think of is how friggin tired and hurting I already am. How much walking will we be doing and how will I manage it? How am I going to handle being out in the sun that whole time trying to fish and not make my husband worry about me, not feel guilty the entire time? There are times that I feel like such a burden to him that I want to set him free to find someone “normal”, but then I remember that I’d be destitute and homeless and so, so, so alone. He really is a saint and makes so many sacrifices and takes care of me in every way and I feel I have nothing to give in return, not one damn thing. So tomorrow I will put a smile on my face and act so happy and like I’m doing good so he can feel good and enjoy himself for a little while. Next week I’ll be stuck in bed unable to care for him, our animals, or myself, again. And, he’ll be beating himself up for pushing me “too hard.”
I felt understood for once reading Dan’s article, realizing that it’s not just me. I’m content just having gained that. But, and there’s always a but, I’m also so disappointed in him for writing all of this deep, emotional crap all under the guise of making money! If he truly was this sick and truly felt the way I feel right now, he’d give his cure to the world for free! I’ve been reading these blogs and comments for a few months now and I never expected to see this type of thing. That’s why I’ve trusted you Cort and let you into my life. What a let down, dude.
Thanks for your honesty. Here’s my experience of communicating with Dan on and off over the years. He is obsessed with this subject. Some time ago he told me that he couldn’t believe how much he was spending on it, that it was taking up most of his free time after work, that he REALLY should let go and have a life but that he kept getting wrapped up in it again and again.
It’s not about the money for him. As someone who’s put together a blog and writes I can tell you that it takes an ENORMOUS amount of work to produce content, get it formatted properly and then send out email blasts and get it on social media. (Plus you’re kind of putting your heart out there – that can be rough). I would be really surprised if Dan ever got recompensed for a small percentage of the time and effort he’s taken to spread the word that recovery is possible. I am very clear that it’s not all about the money for Dan. He’s been doing this for years.
I certainly recognize the desire to get his cure/course for free and I don’t know how much it costs but I know don’t know anyone who’s developed a course, built a website to promote etc. who has put that much time and trouble into something like this who is giving away for free. That said I think you should contact Dan, and if you have money issues or are just tired to the bone of paying for things that don’t work see if you can get a pro bono course or a promise to pay him back if it doesn’t work for you.
???
Thanks for your comment Cort, your experience certainly gives you insight, and yes, it’s pretty rough sometimes which is why so many recovered people trying to help eventually blow out and dissappear. I smiled at your comment about the ‘obsession’ – it’s been less than healthy at times and I note my replies at 3am yesterday as a good example of that. 🙂 But I think anyone that has had the illness and appreciates what it means to go through that can understand it. I see it in lots of people that recover.
Hopefully my response to Ron here is helpful for you Sandy: https://www.healthrising.org/blog/2016/05/12/nobody-knows-chronic-fatigue-syndrome-fibromyalgia-really-like-probably-not-even/#comment-717490
Cort, thank you for the comment and suggestions. It’s not about getting Dan’s course for free or discounted. I see how what I said can seem that way, but that wasn’t my intent. I just get so tired of everyone having a cure to change our save your life “for 4 easy payments of $29.99.” Then to see someone who says they actually were this sick and dealt with the accompanying emotional trauma come up with a “cure” for the low, easy price of…it sounds like more of the same. I can only imagine the time and money this must cost and to be compensated is more than fair! Plus, who’s doing anything for free? As I was reading this I’m thinking what’s the catch? What’s this one gonna cost me? One of the things these illnesses cause among many other things, is cynicism. Once i saw comments popping up asking what Dan did and his being vague, well, I lost that loving feeling. I guess if I had understood that this was an advertisement, so to say, instead of one man’s journey, I wouldn’t have reacted the way I did. I apologize to you and Dan for that.
Hi Dan, I had a breakthrough a couple of weeks ago when I realized I needed to lighten up on myself. I have NO help at all and must do everything for myself. Shopping is a nightmare. I only go for food. I have been sick for 32 years and fully recognize that stress in my marriage triggered a lot of developmental trauma that set me off with the insomnia. EBV followed close behind, but I have believed Dan’s take on this since I first read his book a couple of years ago. The problem is that having been housebound (except when I HAVE to go out) and having NO support from my family, (they love me, but like the rest of you, they just don’t get it and don’t want to), I have NO money left to take Dan’s class. In fact, I won’t have a place to live soon and my car just turned up needing over a thousand dollars worth of work. Things are just lovely all over. I follow you as I can, Dan, and I believe you. It did help to lighten up on myself a bit, but things have to be done and there is no one but me to do them. I have lost everything. And, unfortunately, I am only too aware of just how awful it truly is. Love and healing to all of you. This horrible disease has tortured us all so much. The one good thing I can contribute, for anyone who wants to read down this far :), is that I had become such a “human DOING” mostly due to my dear mother’s conditioning (you will be loved according to how much you do for others, and never, never be selfish. This was a litany with her. I discovered when I spent a year of my life helping her take care of my abusive step-father, that she had lied to me all my life and was, in fact, the most selfish person in my life. What a shock. But the gift has been that in stripping away everything I was doing and I was successful in many areas, my ego has had to take a back seat. So, I must be very careful, because as soon as I feel better, I start overdoing again (well, I’m so behind in everything!). I must keep that awareness of being a human BEING, not doing. I think this is huge for us and I notice a huge percentage of my cohorts above were nurses, famous for thinking of everyone before themselves. I have to work hard to even be aware of trying to be “selfish” but I know I need more of it. Thank you all for sharing. I hope this is a great success for you, Dan. I know you will help many people. with love and gratitude, joya skye
Hi Joya,
You know, one of our biggest assets is how we face adversity, and your positive attitude is remarkable – good for you! (you put me to shame, I developed “cranky old git disease” a couple of years in)
And it’s clear to me that you have gained much insight. Indeed, many of us bend over backwards to help others and moving to be ‘selfish’ isn’t easy for us. What allowed me to prioritise myself and my recovery above all else, was focussing on the impact it would have on those around me (that’s silly, because there is nothing wrong with doing it for ourselves- right? – but there you have it, whatever works 🙂 ).
The financial challenges are terribly, and make everything worse. That’s why a better understanding and awareness is so important, including at the government level so that benefits and medical care becomes more available and not a daily fight. And we don’t just need money for drugs, we need more complete funding for other things that also work, including orthomolecular medicine and many different therapies. In time, I think we will see this shift, I have seen shifts already in my short time over the last 12 years.
Thanks for the kudos Joya, I hope you juggle the challenges that life is throwing at you and move to a space where you are ready to focus all your energy into recovering your health again. Remember that our past does not define our future, you already see the value of making yourself a priority, over time you will find it easier to follow through with that. Perhaps a start is NOT to be “selfish”, but rather to serve others more by looking after ourselves better!? 🙂
Hugs right back at you!
Yes Dan, I so appreciate you and I would like to do your course. Cort suggested for those of us without income to suggest a “pro-bono” agreement with you. Is this possible? If I get some energy back I can get my business up and running again. lmk. I totally support you in your work. Please, no pressure on you, ok? Just an honest question. lovingly, js
Hi,
I am 21 and have been struggling with this disease for about a year and a half. I was very sick unable to leave my bed for months. My mom also had but has since recovered mostly. We both were put on an antiviral and antiinflammatory protocol. It has helped me immensely I returned to college and was doing very well but have slowly been declining. We think it is due to my recurrent esophageal candidiasis. I’ve had it 6 times in the pay year. Has anyone else had this? Or have any thoughts why? My immune work up looks good and have seen many immunologists. They are all perplexed. I guess I should be used to that by now.
I forgot to say – I have CFS
Hi Mia,
I had severe Candida, it was rampant that even my GP at the time wanted to treat it (was extremely high in my blood). I also had it in my mouth at times, but was never identified with esophageal candidiasis.
Went on heavy medication for some time – did the tests again – no difference at all, much to the surprise of my Dr.
Diet certainly had some impact, but in the end it only went when I made my recovery that it went. I would certainly explore diet and overall recovery strategies.
I guess I can’t be completely sure, but I like to think that if I had recovered, and found some way(s) of helping other sufferers with this horrible disease, then I wouldn’t hide them behind a paywall.
You really can’t tell….Dan has put a ton of work into his website and I think he’s entitled to try and get some of that back. If you can’t afford you might do what I just suggested – see if you can get it pro-bono and promise to pay the fee if it works.
I don’t know about Dan’s cure or course but I would not expect it to be easy…No magic answers. I imagine that it will be a lot of work…
Hi Ron. Yes indeed, most of us feel that way. In fact, many people that I have met who recovered, have gone on to help others like I have. But sadly, they usually give up due to the time restraints whilst they are earning a living, or the negativity they experience from their efforts (often they get accused of never having had the illness or something like that).
Like you suggest, I am very motivated to help others, which is why I wrote CFS Unravelled and gave away over 5,000 copies for free. I have also created all the free resources and videos that appear on my website. This has taken a large amount of my time to create, but I have been motivated to continue by the positive feedback and appreciation from people benefiting from these resources.
CFS Unravelled is available on Kindle for a tiny amount which has covered some costs associated with running the website. So there has been no ‘paywall’, it’s all mostly for free. In fact, on top of all my time and efforts to create the free resources on the site, I have also supported people all over the world.
The illness is complex and recoveries need a personalised approach (remember there is no secret magic bullet, right? – I wonder if your comment is based on thinking there exists a quick easy magic cure?). So, creating something more comprehensive is a very big and costly exercise that I have dedicated several years of my life to create. The ‘secret’ is connecting all the things you have already learned in a way that then makes sense so that you understand why it is happening and how you can move forward and recover. Of course, there are many strategies and treatments that may be involved, many of which you know already, whilst others are important distinctions that are missing. But of course, these are different for everyone.
And besides the costs of producing, maintaining and delivering a product or service, just like your doctor, plumber and butcher, of course I personally also have bills to pay. All this is why there is a cost associated with the program, which I am sure when you consider, makes sense to you. It is simply a fact of life, that there are costs associated with providing all products and services. Even if you are set up as a charity, the charity still has to rely on external funding to cover costs, in order to provide free services to the end user. I have no such external funding.
Dan, thank you for the reference to this comment. Please see my response to you and Cort about. I have no idea how to insert the link, sorry about that.
Thanks for taking the time to your reply Dan.
I’d agree that there is no magic bullet but I would add …yet. I believe that in time, 5,10 or 100 years,someone will truly unravel ME/CFS and be able to treat it effectively with a scientific,evidence based,approach.
A hundred years ago people died of simple bacterial infections that nowadays we brush off with a course of antibiotics. I’m sure if there had been an internet in those days, it would have been full of people offering all sorts of programs for those rapidly sinking into septicaemia. And they would have done the bloodletting or skull trephining or whatever, and some of them would have recovered as their bodies mounted an effective response because that’s what living things do sometimes.
Of course I understand that all that you do has costs attached. It would be disingenuous to suggest otherwise, but I’m just a bit uncomfortable that you compare it to the labours of a doctor, plumber or baker. I’m no fan of doctors generally, and there are shonky plumbers and bakers out there no doubt, but what they do is based on evidence and experience. Can you say that about your program? Is there anything behind it other than anecdotal evidence and personal experience?
I’m not meaning to question your integrity or impugn your motives but, like many sufferers I would surmise, I’ve had my fill of charlatanistic hope givers.
Hi Ron,
I know it’s a bit controversial, but my view is that ME/CFS/FMS is not the mystery so often made out to be. Much of what “I worked out” in “my” hypothesis for CFS Unravelled, was actually already surmised decades before (wish I had known that!). There is countless medical research papers that you can search for regarding all the known dysfunctions, but frankly, much of it is just basic known physiology about how the body works, which is why I didn’t have references in my book. But of course, not everyone agrees with that, and that’s OK.
The problem with modern medicine and double-blind placebo trials is that they are set up for single treatments/drugs. But as I am sure you know, what works for one person doesn’t work for another, hence the ‘mystery’. Well, this is no mystery in my view, but the point is that recovery most times comes from a multi-lateral approach that is tailored. How can you do a double-blind placebo study on that? Also, given that many treatments are based in orthomolecular medicine – who is going to pay for it? So anecdotal evidence is likely all we’ll ever have, but there is so much ‘anecdotal’ evidence that given what we understand, we should be using that to help greater number of people. Despite the challenges with the way medical trials are set up, there are efforts in the UK now to do some studies to demonstrate effective treatments. But like I said, unless they include a tailored multi-lateral approach, I would expect them to only be partially effective – no real way around that.
My program is based on my research, my understanding of the dynamics of the illness and my experience. Of course it’s not set-up as a medical trial and whilst the feedback so far has been great, it’s too early to provide testimonials from the program (which you would consider anecdotal anyway), but I expect that will change in time.
Regarding false hope givers, they are not all charlatans either – many think their treatments will genuinely work (often because it worked for them or they have seen it work for others – anecdotes again 🙂 ) But we all get worn out by their misplaced enthusiasm, I didn’t want to see anyone after my 4th year. So I totally understand where you are coming from. My advice is, if it doesn’t make full sense and answers your questions, don’t do it. And if it’s just one ‘magic’ thing, I wouldn’t bother either. Chances are that you will run out of enthusiasm when results don’t follow straight away anyway – hence the cupboards full of unused supplements all around the world (nothing against supplements, but they have no chance to work unless you swallow them).
Thanks again Dan, for taking the time to answer.
Diagnosed December 2013 after having to go private for tests. Probably had M.E. albeit it in mild form until 2011 for 35 years! So still trying stuff out, reading all I can and fighting it!
What I find hard is the disbelief even off the medical profession which probably hurts the worst! You feel totally alone and are made to feel it’s in your head. I’ve self referred to a local hospice that are helping me with acceptance.
Much love, xx
Good luck Brenda!
Hi Brenda – good for you for prioritising to look after yourself emotionally. Yes, at the very least we want some understanding and support if we cannot get some effective help. The key is removing ourselves from negative exposures like that, and recognising it’s really their ignorance and not a reflection on you!
I’ve been sick for over 30 yrs. If I was to recover I don’t think that I would have the same experience that Dan had. Im well aware of the life that i had & how much i push myself while “normals” would crumble if they felt like I do just for a day. Having to accept new limitations as the disease progresses. Im pretty much housebound at this point. CFS & Fibro have hijacked my life. But i continue to look for ways to heal. I’m currently reading the Medical Medium. He claims that we can heal with fruits, veggies & supplements & that healing can take up to 2 yrs. But of course we will make progress €on the journey. He has a website, Fb page & a free talk radio show on Mondays. Ive been listening to him on YouTube. Besides the cost of the book that i purchased on Amazon, his info is all free. I like what im reading and I’ll be making changes to my life accordingly. He claims that its all the Epstein Barr virus & that there are over 60 strains of the virus,and that there are 4 stages of the virus. I think its fair to say that any of us reading this are all at stage 4 at this point. His name is Anthony William for those of you that would like to look into him. He makes sense to me. what do I have to lose?
Hi Donna – I’m really open to medical intuition and it’s been helpful over the years. Not sure if you already have, but reading the reviews on Amazon can be interesting – I like to read the 1 star reviews first ??. A half hour reading is $500 ?.
Most poignant piece piece I’ve read in a long time.
Glad you enjoyed it Peyton! 🙂
After 25 years I believe I understand when to rest, how to appreciate the little things and the importance of ‘being’ not ‘doing’…and yet, I find, for myself, the biggest stressor is the ‘pressure’ felt by those closest to me. When the approval we all seem to search for, is not there, when the look in one’s eyes is one of frustration or sheer resentment, it’s hard to not try to ‘act’ normal at times and push oneself to some sort of level that pleases your spouse even though it is detrimental to you. That to me is the hardest obstacle…the most harmful to healing…and yet it is hard to avoid. One can say to oneself that you should not care what others think and yet, in truth, that is hard to do when it is someone that close to you.
Have a wonderful wellness journey!
Wow Corinne – that really struck a cord with me! I guess I didn’t even want to there, because that really is the WORST as you say. I never really found an answer for that, even after all these years. Perhaps it needs some further pondering.
I have been amazed at all the negative comments on this post. I enjoyed what Dan wrote because it resonated with my own experience of pushing on through ill-health that would send a normal person to bed. I found it a great validation of something I had already realised for myself. Yes, he has a book and a programme to sell but he made it clear that we could often get his book for free – and told us how to do it. Once he had put in that disclaimer, I felt he was morally covered. I’m glad he wrote a blog post on a side issue of ME, not just one to ‘sell’ his programme. These side issues are valid.
I think people are attacking Dan because we all feel so desperate and helpless. We want magic potions and instant recovery. ME is not like that. From what I’ve read, Dan’s programme is not like that. I know we are all tired and weary and discouraged, but please, please, don’t let that make us continually attack people who are trying to help. We need to learn to be generous in our attitude, rather than closed off. Accept with open arms the help we are given, rather than spending all our time complaining because it’s not as much help as we want or the type of help we want or from the person we want. We in the ME community are getting a bad name for ourselves and are putting off good researchers because of our attitudes.
Thanks for you comment Diane. I think you comment about researchers is especially pertinent.
Hi Dan, thank you so much for your blog, all the comments you make and all my fellow suffers.
I had a severe Automobile accident in 1970 where the Driver was killed but I miraculously survived with severe brain injuries, leg fractures, facial fractures, broken collarbone etc and was in a coma for 4 weeks, I was then 23 years old.
In 2001 I was diagnosed with and under active thyroid and been on medication for it since.
Then I was diagnosed with unstable angina and am on medication for that.
Fast forward to 2004 when I was diagnosed with CFS/Fibromyalgia
I had NO IDEA what it was, all I knew was that I was always tired, but having had 2 Children, a husband who at the age of 27 years old was put on a disability pension, had spinal and neck fusion, mini stroke, bowel cancer etc I thought it was “normal” to feel fatigued as I do 90% of the work around house and garden as my husband is now semi-wheelchair bound.
I am now 69 years old, and with each year I get slower and more fatigued.
I had Bilateral Pulmonary Embolism two years ago, large clots went thru my heart into my lungs, and four Specialists didn’t know how I survived.
And because it was “idiopathic” I am on Warfarin for life.
My cholesterol is 9.2 and I can’t tolerate any statins, my Cardiologist has tried them all, and the side effects are so bad, that we are now trying some “natural” remedies
I still get yearly Eccocardiograms, so far my heart has repaired itself, and my Lung Function Test also came back good, much to the surprise of my Specialists.
Then I started getting a tight throat and loosing my voice after eating certain fruits and the Allergist said I had Oral Allergy Syndrome and was borderline Anaphylaxis and have to have a EpiPen with me all the time.
I didn’t think this could happen at my age, as I never use to have trouble eating fruit, or even taking statins 16 years ago, but now it seems my body has had enough
I get out of bed EVERY day and “push” myself to do things. Yesterday a did a little bit of weeding, as I love my garden, but after 15 minutes I was so exhausted and puffed out, I had to stop and sit on the bench.
Because I look well, always dress well and whack on the “war-paint” (thinking I might feel better if I dress up etc) VERY few of friends or relatives believe what I have got.
And “that” I find more frustrating then anything else.
When I get “flare-ups” I can hardly get a cup of tea to my mouth, let alone do any housework.
Every year gets harder, I have got the BEST husband anyone could wish for, who cooks most days, but because of his disability can only do “so” much.
My daughter who lives 45 minutes drive from here has got Ehlers-Dahnlos Syndrome, has got 2 children can only help when she is feeling up to it and my son and his family live in Queensland
Now, EVERYTHING is becoming more and more of an effort
For me the worst is the fatigue!!!!!
By 3pm if I sit in the Recliner to read a book or whatever, I fall asleep for 2 hours solid.
Is all this normal if you have CFS/Fibromyalgia?
THANK YOU ALL
Hi Monique
Well, you certainly are having a tough time and if having ME/CFS/Fibro isn’t bad enough, having multiple conditions on top is a bit rough to say the least.
Many people with the illness get severe symptoms like you describe, but it’s so important to listen to your MD and be closely monitored given your other health issues. We must never ignore symptoms or dismiss them.
All I can say is that sometimes we have to put up with a lot, and the only thing we sometimes have influence over is how we respond to it internally. Acceptance and stillness can be a helpful part in that. Remember to seek help to develop your coping skills where possible. Hope things ease up a bit for you! 🙂 xx
Thank you Dan for your prompt reply.
I see my Doctor regularly, my Cardiologist every six months, get all my blood tests done etc.
I totally agree with Corinne (16 May) that the biggest stressor is the “pressure” felt by those closest to me.
I do “rest” and take “time out” for myself, but so often feel that I am NOT believed.
Fortunately all my Doctors know and believe I have got CFS/FM but I find it hard to cope emotionally with “friends” who give me the “odd” look when I mention that I am too exhausted to get dressed at 6pm and go out.
I have thought already of getting my Doctor to print out a form, saying that I suffer from CFS/FM, that I toss and turn during the night, go to bed tired and get up tired the next day.
Do any other fellow suffers feel like that? And I often wonder, is “pushing” myself in my best interest or should I just “listen” to my body?
You are doing a GREAT job Dan, thank you, at least I know I am not alone, feeling the way I do
Thank you. ?
This is so true. I wonder the same, how is it possible that i am still standing? The amount of ill health i oushed myself in the last six months to go to work is inhuman, the amount of times i felt i will just collapse and die in the middle of the street. We lost our point of reference and any sense of normality, a regular person would call the ambulance if they would feel like we feel just for half an hour. And people not even trying to understand is very isolating. I think the main thing is slowing down, going part time or even going off work for a while and loving ourselves a bit more , with the risk of being perceived as selfish. These ilnesses are daily hell.