After 6 years it’s time I make a change

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:

Share the Hope!

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Chronique
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Chronique

Awesome Dan, keep up the good work 👌

Patricia Simon
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Patricia Simon

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… Read more »

Susan
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Susan

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

Rachel
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Rachel

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… Read more »

Angela
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Angela

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 😊

Sulamaye
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Sulamaye

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… Read more »

Lisa k
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Lisa k

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… Read more »

Carmen
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Carmen

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… Read more »

Paula
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Paula

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… Read more »

Christine W
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Christine W

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.

Amanda Suutari
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Amanda Suutari

Beautiful aspirations, Dan! I fully support them.

R C
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R C

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.… Read more »

Lisa
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Lisa

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,… Read more »

Karin Kelly-Givens
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Karin Kelly-Givens

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… Read more »

Amit
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Amit

Hi Dan, I would prefer that we spread chance through peer reviewed research, It’s too hard to tell what works otherwise.

Meredith
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Meredith

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,… Read more »

Ellie Strand
Guest

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.

Amanda Templar
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Amanda Templar

This is really excellent news, Dan! I applaud this extended direction and these goals – so urgently needed…

David Fyfe
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David Fyfe

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

George Drasin
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George Drasin

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… Read more »

Simas
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Simas

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… Read more »

Judith
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Judith

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… Read more »

Trish Covich
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Trish Covich

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.… Read more »