Reflecting on my efforts over the years
My recent health scare has made me reflect about what happens when one day, I will no longer be here. It has made me reflect about how I spend my life and where to best place my energy and efforts.
For many years now I have been an advocate for ME/CFS/Fibromyalgia/POTS, working hard to create awareness and to educate people about this illness. It hasn’t always been an easy journey; there are many varied opinions out there and some folk are not that respectful when they disagree.
My recent health scare has made me reflect about what happens when one day, I will no longer be here. It has made me reflect about how I spend my life and where to best place my energy and efforts.
For many years now I have been an advocate for ME/CFS/Fibromyalgia/POTS, working hard to create awareness and to educate people about this illness. It hasn’t always been an easy journey; there are many varied opinions out there and some folk are not that respectful when they disagree.
I have persisted, because those with whom my research and explanation for the root cause of the illness has resonated, have given me great support and encouragement to keep going. Hence the birth and success of the ANS REWIRE program. And of course, nothing has been more rewarding than seeing others get their health back, get their lives back.
My single greatest focus from the outset was to bring clarity to the wider patient and medical community. It struck me that despite the enormous amount of information out there on ME/CFS/Fibromyalgia/POTS, it was confusing for anybody to know what was relevant for them and how to use the information. So when I wrote CFS Unravelled and published it in 2012/2013, my goal was to put forward a hypothesis and framework for recovery. My hope was to be a catalyst for change.
Whilst of course there are still varied opinions out there, I feel that progress has been made in terms of demystifying the illness and people realising that recovery from Fibromyalgia/ME/CFS/POTS and related syndromes is possible.
But it’s disappointing that despite my best efforts, I still see the same old conversations with much of the medical and patient community still talking about ME/CFS/Fibromyalgia/POTS as being a mystery. I continue to reflect on how wider acceptance of dysautonomia being central in this illness can be achieved more quickly.
Problems within our patient community & how they impact us all
Whilst I have much experience with the ME/CFS/Fibromyalgia/POTS patient community, I don’t really know what other patient communities for other neurological illnesses or other diseases like cancer, are really like. However, I imagine that whilst they have their own challenges, they probably don’t have some of the unusual problems that we see in our community.
I am talking about some of the hostility, anger, hurt, sadness and desperation. I am talking about the suffering within the ME/CFS/Fibromyalgia/POTS patient community that goes beyond the illness itself.
For example, when someone recovers from cancer, what do other members of the patient community say?
I am talking about some of the hostility, anger, hurt, sadness and desperation. I am talking about the suffering within the ME/CFS/Fibromyalgia/POTS patient community that goes beyond the illness itself.
For example, when someone recovers from cancer, what do other members of the patient community say?
I imagine it is something like “Wow, that’s fantastic, that’s amazing, that’s wonderful.” Even if the person has recovered using a complimentary or alternative medical approach, people say things like “that’s interesting - it would be great if that worked for everyone” or maybe “we need to look into that more!”.
But what happens when people who recover from ME/CFS/Fibromyalgia/POTS reach out to the patient community?
I get emails and messages all the time from people who recovered in all manner of ways, saying that they get verbally attacked and criticised and are often told they never had the real illness in the first place. I wonder if you can see the irony in this!?
Think about it, we fight all the time to ‘prove’ our invisible symptoms, to show that people experiencing the illness are not malingering and are genuinely ill - and then when someone recovers, there are still some people (that are themselves experiencing ME/CFS/Fibromyalgia/POTS) who accuse recoverers of ‘making it up’.
This is crazy, it’s time for a change!
Because these kind of behaviours negatively impact the people involved, but also negatively impact the community as a whole. It spreads negativity, cynicism and hopelessness.
What if instead, we asked:
Interesting, what can I learn from this?
Curious, what do I need to look into here?
Or even
That didn’t work for me, why is there a difference?
Let’s look at another example. If you look at other diseases, let’s say Alzheimer’s for example, have you ever heard of researchers’ work being deeply scrutinised by the patient community, researchers personally hounded, abused or even stalked?
Let’s not get into specific findings of particular research right now, or discuss whether it was good or bad, right or wrong, or whether it was what we wanted or not wanted to hear!
Instead, let’s consider this: What is the impact of such behaviour?
Ask yourself, if you are a talented medical researcher choosing an area to focus on, would you choose an illness where the patient community or part of it might hate your findings and launch an attack, or would you choose an illness with an appreciative patient community that supports you?
I know these are emotional topics. I know that there are strong and ‘justifiable’ opinions. My point is that even if these viewpoints are justified, have we considered the wider ramifications?
That last point might be a sticking point, because of course some treatments that might be suggested are not just unhelpful, but can downright worsen symptoms for some patients. So I acknowledge that the stakes are high and why it might be hard to see the bigger picture at times.
But surely for most of us, the bigger picture is that we want to get better treatment outcomes for everyone experiencing the illness. Looking at what works for people and understanding why it does or does not work for others and having scientists work on these answers must surely be a positive step forward.
If we really want to change some of these negative dynamics, then we must ask:
Why is this happening?
How can this change?
The source of additional pain/suffering for people experiencing this syndrome
Being ill is difficult. Being very ill and ill for a long time is even more difficult and many people struggle to cope with that. But when those around us; family, friends, the wider community and even health care professionals do not show us the understanding and respect that we deserve and need, then such difficulties are really amplified.
I am talking about people not demonstrating understanding, even showing blatant disbelief in the symptoms that people experiencing this illness report.
So not only do the long periods of illness and repeated failed treatments create a rollercoaster of hope and disappointment that really take its toll, but when ignorance fuels comments suggesting the illness isn’t real or the symptoms are imagined, the hurt this creates can be immense for some people.
So not only do the long periods of illness and repeated failed treatments create a rollercoaster of hope and disappointment that really take its toll, but when ignorance fuels comments suggesting the illness isn’t real or the symptoms are imagined, the hurt this creates can be immense for some people.
Years of helping people with this illness has shown me that the problem isn’t just the additional unnecessary suffering such comments create, but the unresolved hurt interferes with people’s ability to move forward with their health and their lives. Often people get so stuck in having to ‘prove’ that they really are sick and suffering, so stuck in the injustices they have experienced and the anger, sadness and hurt this creates, that they completely lose sight of their objective of getting their health back.
A new focus for cfsunravelled.com
The main focus of cfsunravelled.com has been the explanation for the pathogenesis of this illness and fostering hope for recovery. But after seeing so little change over the years in how the illness is recognised, diagnosed, treated and acknowledged, the focus now has to be wider.
Because it strikes me that if we really want to change global outcomes for people experiencing ME/CFS, Fibromyalgia and POTS, then we need to change the dynamics of how this illness is viewed and how people treat each other.
I would like to see:
- people experiencing this illness be treated with respect and have their condition acknowledged as being real and serious;
- people receive a better education and better treatment frameworks and options if they have this illness;
- researchers feel appreciated, not fearful of being hyper scrutinised or criticised;
- doctors be respected and appreciated and as your partner to help you recover;
- people act with kindness and encouragement to those that have managed to recover from this awful illness.
These are big aspirations in an imperfect world, but I believe that whilst no man can single-handedly change the world easily, together we can make a difference.
Change is created by the mass of belief and the synergy of lots and lots of little actions by many people towards a common goal. Making these changes is very possible, but it starts with every one of us saying, “what can I do?”
Well, let’s first have a look at specific goals we might like to achieve.
5 Big Goals to achieve in the next 5 years
I have decided to shift my initial focus to 5 main goals and hope you can help achieve these goals or at least move significantly towards them. They are:
Number 1:
Getting away from the notion that the illness isn’t real
- So crushing that idea that people are malingering or hypochondriacs;
- Getting away from the idea that the illness is a wastebasket diagnosis;
- Getting away from the idea that the illness is simply a collection of many different illnesses;
Number 2:
Create a better awareness of what having the illness is like, to stop people being misunderstood or treated unfairly.
Because even with the best treatments, the way things stand currently, so many people feel marginalised, isolated and hopeless, that their lack of coping erodes their ability to take advantage of any help or treatments available – regardless of how good these might be.
So none of us want our experience trivialised. Nobody wants to hear words like “I get tired too” or “I get pain as well” from healthy people. These symptoms in Fibromyalgia/CFS/POTS are on a whole different level, right? It’s like saying to someone with Alzheimer’s – “I forget things as well”.
And in any case, the illness is about so much more than just those symptoms. Other people, friends and family, they need to know this. I know it usually feels impossible for you to tell them. So it’s time we tell our stories now, not to our families and friends, but to each other’s family and friends!
Number 3:
Have people get diagnosed more quickly
Fewer than one-third of medical school curricula and less than half of medical textbooks include information about ME/CFS. (MECFS clinician guide by Institute of Medicine)
This whole conversation we are having about the illness – about research, about treatments, about solutions and any of the other goals I mention here, are completely irrelevant if people don’t get diagnosed. If you don’t know you have this illness, what possible chance can you have of addressing it and treating it effectively?
We have to stop people from drifting through their lives with undiagnosed ‘mystery illness’ which leads to them feeling anxious or being told that they are simply depressed.
Number 4:
Create better cooperation between patients, their doctors and alternative health care providers to work towards recovery together
- We need to look at closing any rifts and building better relationships between doctor and patients. Just because you have had a bad experience with a doctor or with a patient, doesn’t mean everyone else is like that. Let’s give every individual the benefit of the doubt.
- We need more education around a framework for recovery that demonstrates the value of a multi-disciplinary approach. So it’s time to get away from the ‘us and them’ mentality. People often scoff at mainstream doctors not being open minded to complimentary medicine, but I have actually found that especially with the new generation, this often isn’t the case at all. In the last 2 years, numerous doctors and medical researchers have reached out to me for help and support.
Yes, there is room for medical doctors and psychologists to open their minds to complimentary medicine like acupuncture, chiropracty , naturopathy, physical therapy and so on, but also many complimentary medicine practitioners need to remain open and recognise the critical role and value of mainstream western medicine for their patients. It’s about working as a team.
Number 5:
Bust the myth that recovery isn’t possible
OK, I have been working tirelessly towards this goal for 6 years now already, but I think it still is absolutely critical because if we think it isn’t possible, there isn’t even a point in trying – right?
So it’s time to find ways to bringing these stories into the mainstream. If you have recovered, share your story somewhere in the media, a magazine, a newspaper or even a blog post somewhere.
Tell others – tell your doctor, tell other health care professionals – we need and want these people to have real examples of these stories in order to bust this myth.
We often spend our lives hiding our illness for fear of being judged and due to the stigma around the illness.
But it’s time to pay it forward because someone else having the same symptoms and same challenges as you could be absolutely inspired to get their life back by hearing what your journey was. It’s not about spending your life doing this kind of thing, after all, it’s important that you get on with your life. However, once you are recovered for say 6 months and feel solid and confident, share your story a few times before you close that chapter of your life.
I know it isn’t easy, not everyone is a public person – we want to keep things private sometimes. But there can be ways to manage that, especially when sharing on the internet.
When the times comes for you to share your story, I would encourage you to do it in a balanced way. I totally appreciate that you will feel passionate about whatever treatment or regimen you used to recover, but reflect on your experience and recognise that it was actually probably a multitude of things you did that allowed you to recover. By sharing THAT story instead of an impression that whatever treatment you used was ‘the miracle cure’, you are much more likely to be well received. Share how you tailored your approach to suit you!
Remember that cfsunravelled.com is always one place where you can share you story, but there are others (feel free to comment with links to other places that share recovery stories)
So there you have it – these are 5 primary goals that cfsunravelled.com will be focussing on going forward.
Hopefully you agree with the merit and value of at least some of them - how they can reduce the suffering and move us all towards better health outcomes.
I am going to work very hard to create a series of videos to help achieve these objectives. You are welcome to share these videos on your website or blog, social media or in comments on other websites and forums.
Perhaps you can also create content on your blog or social media channels with these goals in mind.
My final comment is a question to you;
What else can we do to spread the word and create change?
I really hope that you agree with me in the merit of these goals and that you start adding your voice to create these shifts. I look forward to your thoughts and comments.
Here are my first education/advocacy videos/articles:
Here are some images for sharing on social media:
Awesome Dan, keep up the good work ?
I have read a good half ( I think ) of this article. I get where you are coming from Dan and I also want to say, you have done your bit, sometimes there is no further you can go with something. I am now going to call a spade a spade and say that, yes, generally speaking there is a very negative and resistant mind set in ME sufferers. They are the only ones that can solve it and maybe we’ve all had it?? I think there may be two reasons for that, the first I will leave for others to work out, the second I think is actually something to do with the illness. My experience with breathing methods has shown me that when the body is at a low ebb so is the brain. When the brain is functioning below par I have observed a curious phenomena, it produced negative thoughts, depression, and over emotionality. When it functions better with more oxygen and energy thoughts become more positive. You’ve done a great job Dan, maybe this is a conundrum that is not solveable ?
I hear where you are coming from Patricia.
There is no doubt that we are severe emotional and physical strain and that it takes its toll. Your comment about how our brain feels when we are at a low ebb is spot on also – I think most of us have experienced that, especially in terms of being able to cope with stimulation or stress. I myself was quite quick to anger during my later years when I simply couldn’t cope.
Appreciate the kudos. But I look upon this challenge like CFS/Fibro recovery itself – despite the apparent difficulties and obstacles, there is always something we can do, little steps forward – and over time, they can lead to big change. So my hope is that my efforts will be mirrored by lots of people even if small ways like sharing a video or blog on another site or social media to spread awareness. I am really keen to do some videos around the symptoms we experience, because that is especially frustrating when people demean them.
Thankyou Dan! Keep up the awesome work you do. Without your program I’d still be looking for so many answers and feeling hopeless, helpless and very unwell. I plan on being one of your recovery stories.?
Susan
Thanks for your comment Susan – I look forward to that day. 🙂
Hi Dan,
Like that you’re moving forward with your advocacy.
One of the problems you touch upon it’s important in how researchers are treated etc. The struggles within the community. I see this too and it’s important.
My thoughts…
1. The illness itself causes this problem in part as what helps one, worsens another. The very nature of the beast causes this and lack of proper understanding of why.
2. If researchers act with integrity, they have little to fear. We need to ask for high levels of rigor here as those with condition are hugely vulnerable and at risk of deterioration.
3. I think asking people with brain inflammation not to behave like angry beasts is clearly a leap of self control beyond the abilities of many. But I too see how destructive it is. That’s why we need hard science.
We need solutions that work for all, not just a few people, and then others are harmed.
What an insightful comment Rachel – hard to argue with any of that! 🙂
Hi Dan,
I can understand how it’s so difficult to accept that the ANS is behind so many disabling medical issues. I have been diagnosed with Lyme via positive blood test, ME/CFS, POTS, Fibromyalgia, PTSD and on and on.
I was just diagnosed with Sjogrens after a lip biopsy. That made me think “Aha! It was Sjogren’s all along!”… until I read this research linking stress with autoimmunity. It specifically mentioned the ANS:
https://febs.onlinelibrary.wiley.com/doi/full/10.1002/1873-3468.12933
Keep up the good work! You have a lot of support around the world ?
Hi Angela,
Yes, autoimmune issues are common in people experiencing ME/CFS/POTS/Fibromyalgia (goodness I look forward to the day we recognise and label these as merely ANS dysfunction syndrome). I discuss this a little in CFS Unravelled and have seen many people experience this over the years.
Thanks for the support – hope that support translates to a few links to the new videos so we can spread the word about What CFS is. 🙂
IT strikes me that the first thing to do – if you haven’t already tried – is to speak to #m.eaction. Jennifer breas film and work are making headway in shining a spotlight on the illness and raising funds to advocate and pull funding for research in. If you want to move toward drawing the community together and promoting your hypothesis further surely it makes sense to work with them in partnership? But maybe you also have to concede some ground, whilst I totally accept how vitriolic and disbelieving some m.e patients can be about those who recover, and especially those who recover using brain plasticity methods, and whilst I also believe there are many many people with m.e who probably don’t apply discipline and commitment when on the ans rewire or any other programme that uses similar approaches, you may also have to concede that there may be some people who do not recover using your methods however hard they work at it, however disciplined and committed they are. If some stick in the muds are welded to the idea they can not be ‘cured’ with nothing less than a magic bullet, there is also the possibility that the ans approach simply can not work as effectively as it does with some people as it does with others. You may have to have some flexibility in how you understand the illness. Because you and others have recovered with brain plasticity at the core of your recovery does not necessarily mean, without further research and investigation, that the autonomic nervous system is heal able using your methods in every case. There probably needs to be research into our brain structures, evidence of what is going on in our brains and how that changes if we apply rewire methods. If you approach #m.eaction with a desire to further investigate your own hypothesis, if some more external concrete measures of your hypothesis and treatment could be established I think this will really help promote your ideas and help more patients and potentially help researchers bark up the right trees. It seems to me that #m.eaction are at the cutting edge of our community, if you can build bridges with them your input will be magnified
What a wonderful comment you make! 🙂
I certainly appreciate that people’s recovery experience varies and that some people struggle to move forward despite their best efforts. But I never want to write anyone off, I always keep hope for them and believe that they just need to find additional strategies/treatments to make their progress. There are usually triggers/dysfunctions that are very severe and need to be resolved when people get stuck, but not all of them are easily resolved! The more research and resources we get for people around these, the better the outcomes will inevitably be.
Having reached out to people for many years, I have become a little weary about doing that. As you point out, many people are offended by the mere idea that recovery is possible or that the illness isn’t a complete mystery. However, I would certainly appreciate such connections if people approach me. I hope to get opportunities to work together with others such as the people you mention to work towards these goals.
Great ideas Dan, and I have shared your video on my fb! I have promoted several times to people who have me cfs pots as well, some were interested and others flat out refuse anything but pills to help. I think possibly pills can be helpful in some cases but it’s soo very much more than that. And watching your new video I was saying out loud to you “Heterogenous” and then halfway through you said it and so I was happy about i! I have known many with pots who aren’t crushed by fatigue (although some are) and so refuse to listen to anything or read anything about me cfs.
Thanks for the advocacy!
BTW I have certainly educated a few Drs myself! My current Dr. Is doing his residency and because of me bringing in research papers on me cfs and pots, he is definitely interested now! I also sparked an ER Dr interest when I was lying down and my p was 69 and I then stood up and was calmly talking to him and my p was 156! AS I stood there talking to him my p jumped around and fluctuated 156 to 122, 137, 119, 147, etc and he couldn’t believe his eyes! I have heard Docs who chalk things like this down to faulty readings.. But he did not do that… So.. I dont like having pots but I know I have made an impact on Drs and some regular laymen people in my life as well.
Now I must say that my P hasn’t been that crazy for a long time now and I am slowly getting better. I hope to one day do a recovery video or story!
Have a great day!
Thanks for your lovely comment Lisa – really pleased it resonated with you.
Really appreciate you sharing the video about What is Chronic Fatigue Syndrome – I hope to create many more such videos but without links to them (like I have in this post) on other websites and without shares in social media, I doubt it will reach many people – so thanks for your help. If everyone created a handful of comments on different sites, these videos would soon get top ranking in youtube. 🙂
Yes, it’s frustrating about the disconnect between the ‘different’ illnesses – POTS is one of the few that is actually correctly identified as dysautonomia.
It’s great you are connecting with some understanding doctors – your experience is totally normal – I remember when I was recovering I used a heart rate monitor and had the same experience as what you describe – it looked like the device was broken!!! However, I confirmed this many times with different instruments and also found really strange behaviors after exertion!
Thanks for your support with advocacy. 🙂
Wow, Dan – this is SO so so good to hear!!! I really love what you do – and you put into words what has been “haunting” me a bit since I got better: All the way throughout my recovery I keep witnessing exactly what you are expressing here: people attacking others for getting well! It’s truly unreal :'(
And especially people, who experienced themselves HOW hard it is not to be believed in regard to what they are going through – and then turning onto their “fellow sufferers” and doing exactly that, and often in SUCH a vicious way … It is SO sad!!!
I have to admit that it kept me from sharing more before. I still have a bit to go to full recovery, but I went from decades of unwellness, then years in bed, to finally LIVING my life intentionally and joyfully – and working full time again, so it’s already pretty amazing 🙂 Yet only very recently I have started sharing more about that, to pay it forward – in a way always expecting the “big explosion” to come, not a very helpful thing, yet reality, isn’t it … Guess I haven’t felt up to that yet.
I am really looking forward to hearing more from you about your big goals, you are doing such important work, THANK YOU!
One last thought: I am a teacher and just recently had a chat with my principal that made me aware HOW important it would be to get the information about ME/CFS etc into schools. I live in Germany, and here we know even less about it than in the Englisch speaking countries. I didn’t even know that it was ME/CFS challenging me for almost two decades and had to figure it out myself … Here in Europe we even have children being taken away from their parents for not sending them to school because so many doctors and the authorities have no clue about ME/CFS.
I guess that will be my new focus – to find a way to get that info into schools, so teachers, principals and school authorities will be informed when they come across “weird looking things” in the lives of their students and know not to push them and make it worse …
So I will be looking out with anticipation for your videos and am totally with you in regard to all of your goals – scarily big goals, but EXCELLENT ones!!! THANKS again for all the work you do!!!
Thanks for your great comment – I really appreciate the support.
My advice is to keep your progress to yourself, be totally self focussed for now until you are fully well in terms of sharing your recovery progress. Then when you are well, share your story in an interview (appropriately structured for privacy so you are comfortable with it) and then share that whereever you can (like 5, 10 or 20 different places). But after that, move on with your life, don’t wrestle with the naysayers – it isn’t good for you.
Indeed we need more education, but the key is getting it to all the different places. The great thing about youtube videos is that they can be embeded on different websites – so anyone with a blog or website about CFS/Fibro/POTS or wellbeing can share and embed the video. You can also create links alerting people to the resources by simply explaining about a great video that explains What Chronic Fatigue Syndrome is.
If everyone does that a few times, these videos will soon rank in youtube.
What you say about schools is so true. I have seen this quite often with children experiencing ME/CFS, or even with other illnesses that are not quickly identified. It’s not just Europe where this happens, but other places too. It’s crazy when child services comes knocking on people’s homes because the child is too sick to go to school and nobody believes the child or the parents!!! Surely there is a better way to employ those resources!
Hopefully everyone will take 5 minutes – do a few google searches for CFS websites and start posting some links. 🙂
I would add that celebrate improvements would help! :). As with many other diseases some improve, some get worse and some have full recovery. I think I am a bit jealous of the full recovery group, to be honest. I have now had cfs/fibro/dysautonomia, etc. Etc…..for over 21 years. And it is such a weird illness I still question myself! But I will not give up. And maybe finding just one cause isn’t going to help…maybe our goal should be improvement and living our lives to the fullest, no matter what we are thrown. Maybe there isn’t just one cure either. Maybe we just need to help each other have Hope. I think we feel invalidated when we have honestly tried all the things that someone fully recovered has, and are still trying, and there is little improvement for us. Does any of that make sense? :). And having been treated so poorly by the medical community and others, it is understandable that we are a defensive group!
That makes ABSOLUTE SENSE.
In fact, that is my whole message, that there isn’t ‘one cure‘, but rather many many different ways to recover. However, understanding how it happens, makes it much easier to make progress.
And you are so right, progress or partial recoveries should be celebrated also – it’s not all or nothing! yes, I do encourage people to seek more, I always will. But that doesn’t mean that when we simply make progress that it isn’t worthwhile – it absolutely is!
Last but not least – your comment about ‘living our lives to the fullest, no matter what’ is really spot on. Finding some happiness and being at ease even if things are bad (or perhaps especially when they are) is really important. In fact, I would go so far that it isn’t just important from a happiness or spiritual point of view, but that it is actually an important step forward in creating a healing environment. I often see people do much better when they make peace with the illness. For some people this is easier than others – to be honest I couldn’t envisage this for me when I was sick, it was only something I managed to do after I recovered. But I have seen others do much better than me with this. 🙂
Hello Dan,
Thank you very much for your hard work to help us all. I agree with the 5 goals having experienced some of the negative reactions mentioned. Hope to spread the word and wish you success with that too.
Thank you Christine for your support and any efforts to share links on the internet to the new videos. 🙂
Found your reply to R.C.(guest) helpful as I am in a somewhat similar position – still struggling with the programme. In my experience much of what R.C. says could also be applied to the U.K. as far as medical treatments are concerned. Too true about Western v. Holistic medicine. Many thanks for all you are doing to help.
??
Beautiful aspirations, Dan! I fully support them.
Thank you so much Amanda – and thanks in advance for any efforts to share links to the video about what CFS is. 🙂
Hi Dan,
Thanks for your words of wisdom. Though I’ve been doing my best to work the ANS REWIRE program, I still have not recovered. It can be frustrating to understand the science and do one’s best to try, and still not experience the kind of recovery some others have been able to achieve. I appreciate your empathy via experience, and encouragement to keep trying.
I’m not sure if this is within your area of expertise or not as an Australian, but I think that one of the major hurdles in the U.S., is access to quality affordable medical care. For those without adequate health insurance, finding helpful medical professionals to act as partners (especially in less populated areas) can be extremely difficult. Coverage for visits to naturopathic doctors is practically unheard of.
So, I might add to your list, getting insurance to cover some assistance with the kinds of things in your program that have been helpful: the program itself, meditation instruction and retreats, naturopath visits, relevant supplements, diet consultations and meal preparation services, neuro-cognitive retraining and individualized therapy, and things like that which can help support patients in their recovery. In my dream world, the medical community will begin to adopt these interventions in a more robust way, not just for people experiencing ME/CFS, but also all other health challenges. I believe your approach could be used more widely than for just ME/CFS and Fibro, and could point to the future of what all quality comprehensive health care includes.
Thanks again for everything!
Hi RC
Totally get how you feel – we want to be rewarded for our efforts!
The key is to review your approach on an ongoing basis. Ask yourself, how am I feeling, how am I triggered, what are the worst physical triggers?
Then adjust your approach – always feel free to reach out through the ANS REWIRE site! 🙂
Yes affordability for medical treatments that involve a variety of interventions and treatments is a problem the world over, but of course in some places it is worse. This is espeically the case where the treatments are focussed on health (usually integrative/functional medical approaches) as opposed to disease/symptoms (usual western medicine).
Thanks for the kudos and the comment and any efforts to share links in comments on other websites about the youtube video on what chronic fatigue syndrome is. 🙂
Really good post. Good for you. Blow this wide open and let’s see that change. P.S. Here’s the secret to EVERYTHING: your fascia. CFS? fix your fascia. Fibro? Fix your fascia. Back pain? fix your fascia. I could go on. How do you fix your fascia? By fixing your life, your nutrition, your thoughts, your environment, your way of being in the world, and your metabolism. Start by fixing your metabolism (read the book Eat for Heat to make yourself WARM), then look into yoga, self trigger point massage, and maybe even CBD oil. BAM. It may take a decade, but at the end of that decade, you’ll be a powerhouse. Just do it. Start now. <3
Thanks for your comment Lisa.
Have you yourself recovered from CFS/Fibro or help people with their health?
Hi Dan – I am all for creating change and when I first saw what you were doing years ago I was happy to see how clear and concisely you described your health journey, and it was just like mine. I totally feel the frustration you describe with the reactions and misunderstandings to this illness. I have learned that the more “alternative” approaches to my health have been most helpful, and I no longer seek out diagnosis or accept the notion that I need mental health services for times when I am so exhausted. Instead I have learned to trust what my body is telling me, and yes it can be so lonely and isolating .. but when I am able to recalibrate without all of the outside world stresses than seem to affect me, then I do get better and it can be slow. So acceptance of me has been key. It is not easy, and getting better is sometimes just a notion. Patience is so key. Health professionals in my experience want to treat with drugs, and that is the last place I want to go – if I can help it. It is all about my being patient with myself and where I am at. Few understand when I know the best thing for me is to stay home and eat simply, and sometimes I have to remember that even TV programs can stress me out. Acupuncture, homeopathy, gluten-free, yoga, etc. are examples of where I will go first. Kindness and understanding are sometimes all I need to get through a day.. and that starts with me. Thanks for creating a place to express and advocate for us all! You are a gem!
Thank you Karin – I am glad you feel supported by the website. Thanks in advance for any efforts to spread the word about the videos to create a change in how the illness is viewed. 🙂
Hi Dan, I would prefer that we spread chance through peer reviewed research, It’s too hard to tell what works otherwise.
Hi Amit
Keep in mind that we are not simply talking about treatments here – it’s about a change in how the illness is perceived and how we look at health.
But yes, peer-reviewed research is great – unfortunately it has to be sponsored by interested parties to fund it – if you look at how most people recover, it’s never through a ‘magic pill’.
Sure, I just think in this day and age people are skeptical of what they read on the internet. That’s why published research is useful.
Absolutely.
It happens in the Lyme community as well. Many Lyme patients have bought into the lie that chronic Lyme is always incurable. But I feel like this is the case with all autoimmune diseases and this thinking benefits big pharma / monthly recurring rev. I do think it can be hard hearing stories of folks that stopped gluten or became a vegan and no longer have “CFS ” so it does make one wonder do we really have the same disease? I think in some cases it’s a fair question to pose when for many it has been so complex, but I agree with you that the nastiness and discoragement in CFS and Lyme community in no way benefits us as patients . Anyway I started reading your post and thought oh my gosh he is sick of are CFS antics and leaving. So grateful that is not the case bc I’m so happy to be starting Ans rewire and I have never felt more confident in my recovery chanc s?
Thanks for your comment Meredith.
It makes we wonder also – “chronic fatigue” and “chronic fatigue syndrome” are two different things – I hope the recent video about What is Chronic Fatigue Syndrome really helps clear up those kind of issues.
I heartedly agree with you, Dan. I am also involved with #MEAction in the US. I posted a short summary and link to this site in response to several days of discussion in their Slack channel regarding definitions and infighting amongst ourselves. As always, I will do what I can to advance the cause.
That’s great Ellie.
It will be interesting to see what comes of it.
This is really excellent news, Dan! I applaud this extended direction and these goals – so urgently needed…
❤?
Your book makes out recovery isn’t too complicated. Not sure why your looking to focus on the points about in creating aware and support etc?
Sorry to hear you have been in hospital. Wish you well
Hi David
Well, the pathogenesis certainly is complicated and it would be fair to say it has baffled much of the medical community for a long time.
The aim of CFS Unravelled was to help people get their head around it – if you feel that ‘recovery isn’t too complicated’ then it’s certainly been successful.
Certainly for some people it can be a simple process (even if not necessarily easy), however, I personally do feel it can easily get complicated because there are so many secondary dysfunctions that many people experience.
If you look at the article above, I did explain some of my reasons. I suppose if I had to summarise it, it would be that these two obstacles to recovery can benefit from advocacy work:
1.) improving diagnosis rates so people can focus their efforts to regain their health
2.) dispel the myths so people are treated with respect so that they are not distracted from their primary goal of becoming well again.
Thanks for the well wishes.
I believe that the understanding of the myriad of symptoms of ME/CFS/POTS/Fibromyalgia are difficult fit in to the pattern of thought or training in Allopathic Medicine. Medical physicians attempt to fit a specific symptom into a specific disease process or anatomic location. If a patient comes in complaining of body pain, the physician will think of it as a pain problem. POTS-probably a blood pressure problem, etc. Even if the Medical Physician would understand that disautonomia is the problem, treating it is not in the training or understanding of Allopathic Medicine.
Perhaps the most effective trechnique in ANSRewire is to use mental techniques to avoid the triggers. I doubt if 1% of Allopathic physicians would adhere to or understand this technique.
I think there are many problems in gaining general understanding of CFS, but I believe that Allopathic Medicine is presently not set up to make great positive strides.
I wish I was healthy enough to point my finger at everything that I disagree here and elsewhere on your website, but I’ll try to make at least a few points.
Dan, if you want to be taken seriously by more people, you really need to start appreciating facts and science.
We have seen incredibly biased doctors working in CFS specific clinics in various countries, supposedly curing most of their patients, when in reality nobody really recovers there. It’s hard to understand how doctors can be so ignorant, but they often are. I don’t see why your claims would be any different. I’m not saying that nobody ever recovers, and I believe that you have, but whether you/we/everyone else has or had the same disease is an open question.
Your ANS theory maybe a nice concept because it seems intuitive and is easy to understand, but that is also its major flaw. It’s way oversimplistic and is lagging some 30 years behind the actual research. It’s not much better than BPS model.. it doesn’t mean it can’t be helpful for some people, especially those who have no clue, but that’s about it, though I see that it can give hope to people and something to latch on.
It seems that you’re basically indirectly suggesting that anyone can recover if they really want and try hard enough. That is everything that pwME have been fighting against for years. Why? Because overwhelming majority don’t recover. I’d be willing to bet that majority of ANS rewire participants with ME don’t recover as well, especially more sever ones who have a diagnosis and have little to no mental problems.
Let’s go further. Now we’re fighting for biomedical research to solve this disease. Do you think your message ( of course, without any data to support) ‘you can recover with “multi-lateral” approach’ is helping or hurting? Nobody’s gonna be pressured to invest in this illness if the message stays that ‘you can recover if you want’, right?
I can see that you’re a reasonable person, but I think your personal experience (and now your financial interest) is really clouding your judgement.
Also:
Biomedical researchers in ME community are absolutely cherished. While on the other hand UK/Denmark psychs are hated and for VERY good reasons.
“Let’s look at another example. If you look at other diseases, let’s say Alzheimer’s for example, have you ever heard of researchers’ work being deeply scrutinised by the patient community, researchers personally hounded, abused or even stalked?”
Hounded, abused, stalked? It’s all nonsense. Never happened. Yes, pwME can be quite harsh, but only for very good reasons. Nobody has stalked anyone. This is ridiculous. QMUL disproved this.
“Ask yourself, if you are a talented medical researcher choosing an area to focus on, would you choose an illness where the patient community or part of it might hate your findings and launch an attack, or would you choose an illness with an appreciative patient community that supports you?”
PwME don’t hate findings. They hate unjustified extrapolations from unreliable data. There are lots of amazing scientists researching ME/CFS. They are VERY appreciated and has all the support they need. Even psychologists, likr Leonard Jason, who is very well respected in ME/CFS community.
“But surely for most of us, the bigger picture is that we want to get better treatment outcomes for everyone experiencing the illness. Looking at what works for people and understanding why it does or does not work for others and having scientists work on these answers must surely be a positive step forward.”
If you base your research on objective outcomes, then yes. Psychosocial/BPS/LP, etc folks don’t do that and don’t like that, because their results don’t hold up.
“The main focus of cfsunravelled.com has been the explanation for the pathogenesis of this illness”
How can you explain something that you don’t understand, and nobody else does?
“researchers feel appreciated, not fearful of being hyper scrutinised or criticised;”
“doctors be respected and appreciated and as your partner to help you recover; people act with kindness and encouragement to those that have managed to recover from this awful illness.”
The only researchers that feel fearful are the ones who should, because they know very well that their findings are a load of nonsense. There’s no need to be fearful if you’re doing high quality research, not trying to exaggerate clinically meaningful findings.
“Getting away from the idea that the illness is simply a collection of many different illnesses;”
That’s opposite to what many researchers think. Subsets subsets subsets. Current thinking is that there are a few ways to end up in the same shithole of CFS. That’s very important for everyone to understand, including you. Especially you. It’s not impossible that what you’re seeing anecdotally is a subset of people from CFS wastebasket who got in this in a specific way or have a specific pattern of theie disease, and that’s why they get better. We’ll see.
“Create better cooperation between patients, their doctors and alternative health care providers to work towards recovery together”
One thing that ME/CFS community really doesn’t need are alternative health quacks who often offer very expensive unproven treatments which don’t help and diminish our credibility in front of serious doctors who understand what evidence is and also family.
“Yes, there is room for medical doctors and psychologists to open their minds to complimentary medicine like acupuncture, chiropracty , naturopathy, physical therapy and so on”
Accupuncture, chiropracty, naturopathy, all these things 99% of the time are simple placebos. They do nothing and can cause serious harm.
Physical therapy is different, but usually a bad option for ME as well.
Thanks for your comment.
I agree with you wholeheartedly, Dan. As usual, you have expressed everything in a straightforward, articulate way. In the US, awareness and acknowledgement of CFS/ME seems to be growing, and there are strong, well-funded research programs underway. There is a national organization of a board of experts to represent CFS/ME patients by advocating in a number of ways on our behalf. However, the paths of research for potential causes, cures, etc. are so numerous as to be almost laughable, if not so overwhelming. Just reading Cort’s “Health Rising” blog from time to time is mind-boggling and frustrating. “So many potential cures…so little time.”
Thank you for all you have done. I will share this information in any way I can, but my reach is minimal up here since I haven’t built a “community” as I did in my 27 years in Houston, TX. Now I’m focusing on building up my stamina, pacing, using ANS REWIRE and getting myself healthier.
With appreciation, Judith
Wow, Dan! So much hard work from you? It’s outstanding dedication and yet it must feel like you have been unravelling not one but two huge problems.
1. The cause which you have achieved without any doubt and 2. Gathering likeminded people to make a huge shift within the medical community and the village!!
I’m so grateful beyond words for the help you have given. The clarity and validation of the illness has allowed me to have renewed hope, faith and therefore the STRENGTH of mind to keep trusting and to keep practising with the tools you have given me. This is a very challenging calling you have been given. I believe even the greatest speakers like Jesus’ disciples were really tested. ‘Why me lord?’ and yet deep down they knew they were on the exact path no matter how daunting it may seem. Go well Dan, you are an earthly angel. That’s for sure.
Thank you ??
Hi Dan, thankyou so much for all your hard work to help everyone still suffering. I know even 1year ago I couldnt manage to read nor write as well as I can now…slowly recovering from CFS/FIBRO.I think its disgusting the way we are generally treated by drs specialists work friends and esp family. I have read how so many have been abandoned by so called loved ones. Even whilst my GP is supportive he still treats my hubby differently because he has a heart condition. Sadly my own sister has just been diagnosed with Parkinsons..and I feel somewhat jealous because whilst her symptoms are very similar…other family have treated her differently-she has a real condition- type of reaction. I feel awful thinking like this but HELLO I have an awful condition too! My life matters! My future has been changed too! Its so high time this percetion changed so we arent fighting so hard to simply be heard. I have hope now that I can make some change…perhaps help your goals too. Thanks again…stay strong!
Regards Karen
Like being so ill isn’t bad enough, it’s a bit of a slap in the face isn’t it.
Unfortunately that is the plight of ME/CFS/Fibro/POTS warriors the world over.
hi dan. thanks so much for your efforts and fantastic work so far! your new goals seem to make sense to me. concerning your question „What else can we do to spread the word and create change?“ here some ideas of mine:
1. press/media: try to get your message in to (important) newspapers and television.
2. translation: it would help many other people around the world (and therefore the spreading would be larger), if you could get your book and / or your ans rewire program translated in orher languages (german, spanish, french, etc.; may be by implementing google translate or may be with the help of people who live in a non-english spoken country, whom are in your program or recovered with it…?). i‘m from a german speaking country (switzerland) and my expierience is, that unfortunately not everyone understands english good enough, to be able to handle such a complex topic (and this is for sure similar in other countries). .
3. new book: write a new book with an well known, big edition (they will also translate it). when they realise, that there are millions worldwide suffering from this disease, i‘m pretty sure they see the potential…
4. widely seen talk: try to get the opportunity to give a TED-Talk (https://www.ted.com/talks).
5. strong worldwide network: try to build a network of people all around the world that help spreading your work (may be by initiating an education program to educate ans rewire instructors; may be on a licensed base?)
what do you think? 😉
kindest regards enrico
Thanks for your thoughts Enrico.
Given the challenges with traffic these lasts months, all things need to be considered.
one more idea: try to get medical doctors on board… (could be a tricky one though… ;-)).
hi dan. first, as i said before many times: you’re doing a fantastic job!
after being ill for 18 years, i‘m in your program for a little more than a year now, and i made huge progress. in fact, i hope to be a new recovery-interview partner. soon ;-). my ideas: get more media presence (television, journals, newspapers), write a new book, try to work with patient organizations, get in touch with prof.ron davis from stanford (http://med.stanford.edu/sgtc/donation.html), try to build a international network of therapists (may be licensed for your program?), get your program translated (spanish, german, french, italian, and others). try to convince researchers to do a study with patients following your program. and for sure: go on! your work is tremendously important and highly appreciated! hope some of these ideas might help… best regards enrico
Thanks for your comment Enrico
Thank you Dan. This gives me hope as a person with ME and also to feel more empathy and understanding towards those working towards progress and healing ( which is exactly where I want to be). Your words are so helpful.
Thanks for your comment Lydia.?
Thank you Dan for all the wonderful help you are extending to others. I am trying hard not to be angry or emotional about how your efforts have been viewed. As am member of ANSrewire I have finally started to recover my health after 40 years of misery. It is not easy and I’m in my 8th month of practice. Dan you are a life saver! As Winston Churchill once said “Never, never, never, never, give up!” I am truly sorry that you and your research are not being recognized as it should be. However, it is not surprising. As the story goes; First, truth will be laughed at. Then it is slowly accepted. Finally, everyone embraces it as a forgone conclusion.
I will definitely share my story when I recover. However, I can just about hear the naysayers comment. “She never really was ill.”
Thanks for your kind words.
I am so grateful that you share your experiences and thanks again for your efforts. I completely agree with your aspirations. ??