CFS Relapse: Katie learns how to end the ME/CFS relapse cycle
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When you have to deal with yet another CFS relapse, it’s easy to believe that recovery from CFS is not possible. After all, if there is no agreed upon cure for CFS, how can you expect to get well, right?
Most people find as they experience more and more relapses, such beliefs become more ingrained. In fact, most people I meet that experience ME/CFS, seem to have that experience.
Katie shares how she had set-backs for years, and then how she finally broke through and stopped the ME/CFS relapses to achieve a full and lasting recovery, which she enjoyed ever since.
We know there is no one-fit-all cure for ME/CFS, but many of Katie’s thoughts and techniques were exactly what I did to stop those ongoing relapses. In particular, her attitude towards recovery and the meaning of her symptoms – as she put it, she “‘relaxed into recovery”. Sounds odd, but on this side of the fence, it makes perfect sense. I wonder what you think? Share your thoughts below AFTER you have listened to the interview!
Ending the CFS relapse cycle
Would you like to comment on these things:
- Did you have similar experiences leading up to onset of ME/CFS as Katie?
- Can you identify early warning signs of ME/CFS like Katie?
- Did you have similar frustrations to Katie with explaining and getting understanding from family, friends and doctors?
- If you are vegan or vegetarian, is your diet optimised to include sufficient fat and protein?
- What do you think was Katie’s key to stopping relapses from ME/CFS and to make a full recovery?
- How did Katie deal with the conflicting information about ME/CFS? Who did she listen to?
Please leave a comment at the bottom of the page!
The way Katie overcame her CFS relapses, makes her a real shining light of hope where there is often only darkness. Her willingness to share her personal experience and insights to give hope to others with ME/CFS is to be respected and commended. Whilst everyone in life comes from a different viewpoint, in my experience those that recover from ME/CFS often tell a similar story. If Katie's voice resonates with you, please follow her on her wonderful blog here :
Here are some social media images for sharing:
You made a comment in the introduction that disturbed me greatly. You said that if you did not believe recovery was possible it would not occur. I think this is a very dangerous idea. While having hope is important as we all know to quality of life; many people recover from all sorts of illnesses without a belief involved.
Thank you so much for your comment Joyce. I am really happy that you raised this point. Please allow me to clarify.
You are right, people do recover from many illnesses wihtout belief being involved.
However, as there is no single treatment cure for MECFS or Fibromyalgia and people often continue to relapse throughout their life, more is required than just waiting for recovery. Did you actually listen to the full interview? I suspect perhaps you havne’t had the chance to yet.
I would hope that if you have listend to a few of these interviews, that you are starting to recognise a common theme on how people recover from ME/CFS and Fibromyalgia Syndrome, what it takes to get your health back. Let me spell it out for you; it takes a lot of effort and consistent taking of action and changing of our ways, including drastic lifestyle changes.
If you don’t believe that recovery is possible, why would bother making all that effort and all those changes?
agree tottaly
meant totally to Joyce
Absolutely. It’s like going to someone with cancer and saying,”If you don’t think positively then you won’t have a chance of surviving this cancer.” It’s B.S. There are many people who have positive attitudes and believe in recovery, but don’t ever recover.
Totally agree – it’s not just a matter of belief. (wouldn’t that be nice)
One caveat is that I have found that people who don’t believe, often struggle to engage in certain brain-training exercises and often don’t follow through so well. I know from my own experience that when I ‘tried’ treatments that I only had a shallow belief (perhaps more like a hope) and didn’t get early results, I quickly stopped investing my effort in them. This included supplements/medications that were already purchased sitting in my cupboard!
Yes I have had CFS or ME since 2017. 2 years of hell, followed by near normal life. Letting go of all the things that you think are so fucking important is the key. Who said they are important? They are stopping you being well, and worrying and striving for them is making you sick. Your like a monkey with a ?, can’t drop it. Most of the 15 people on my hospital group could not believe that they could ever get well, so they just didn’t try. They just scoffed at the advice and are still sick today.
Hi Phil
Sounds like you are doing well – so are you approaching recovery?
While I can relate to much of the early part of the interview I found it irritating when Mr.Neuffer kept saying that 8 years was a longtime to be ill. I was diagnosed in Feb 2001 having been ill since September 2000 and am still ill with this hell. My doctor told me that when I had glandular fever when I was 15 / 16 years old was the onset although I had a remission till I was 31 when it flared up and it has not gone into any meaningful remission since. Today I’m 44 and struggling, the idea that I just need to rest to get well doesn’t ring true having done virtually nothing for most of the last 13 years. I’m a meat eater always have been and always will be.
I just don’t see any sign of an approaching recovery at all
Thanks for your comment Andy. Sorry, I didn’t mean to irritate. I just know how people who have been ill for decades sometimes dismiss someone who has been ill for 10 years, 5 years and obviously especially if it is only 1 or 2 years. I myself fall into that. But I want to remind people that just because it is not as long as others, doesn’t mean that it isn’t real or valid. It wouldn’t make sense to dismiss someones success just because they were ill less time than you.
Sorry to hear about your ongoing struggle. “Just rest” and get well never rang right with me either (I rested a long time and never improved!). But it is about something much deeper. I suspect you haven’t read CFS Unravelled, but if you listen to my video explanation for the root cause of ME/CFS/Fibromyaliga then you will hopefully make the connection of why ‘just resting’ isn’t that easy to do. It is about methodically and consistently removing all the triggers, which is challenging when the illness itself is also a trigger. Thanks for sharing! 🙂
My problem with all this discussion is that now having CFS/ME for over 35 years closer to 40 I have realized that this condition changes significantly every decade. Some of the original symptoms still exist for me today. Those are mostly the original set of criteria .or symptoms I was diagnosed with which defined CFS/ME diagnosis. Then this disease progressed to full auto-immune disease which is different for all patients in its manifestations and pathways. You really can’t compare someone with 10 years of CFS/ME with someone suffering for 40 years. There is simply no comparison even though you feel dreadful in each any every stage. In India they describe the 7 stages of degenerative disease and this is very significant in this case. By the time you have CFS/ME or 40 years you are most likely in level 6 whereas at 10 to 15 years you will most likely be at 4 at most.Anyway hope you find this of help. Good luck to you all. I hope you do better than I have!
Yes indeed there can be differences in ME/CFS over time – however, I would also say that it can go the other way. I meet many people whose symptoms and dsyfunctions resolve over time and they improve or stabilise over the years.
This is why I like to share a variety of ME/CFS recovery stories, including from people that recovered after a year or two and those that recovered after a decade or even several decades.
Thanks for the great interview! I’ve mentioned before that I’m on the road to recovery (after the help of your book). I have made such tremendous gains it’s unbelievable! It was hard for me to listen to the interview because I was afraid it would bring on a relapse…(that fear thing of just somehow listening to someone else’s story would do that). Anyway, I’ve come to a point in recovery where I feel so good that I’m afraid it’s not real. This interview helped me to see that I’m not alone in that feeling. I also gained some tools to help me push past that. It’s uncanny the number of things that Katie talked about that are similar to my situation, both in the illness as well as recovery. Both diet, supplements and an attitude adjustment have been the key to my improvement. I went to a naturopath to help jump start my healthy lifestyle.
Some things I find interesting:
-soy is bad, it makes me sick now I know why. I will have to try Tempeh.
-many people with CFS/ME are not meat eaters. Every once in awhile I will enjoy a steak or burger but not often.
-high strung personalities with an inability to fully relax- that was me- I’m still working on this one…
Thanks again for the positive inspiration!
Thanks Sherry – glad it resonated with you and well done or your excellent progress – the credit is all yours!
Thank you so, so much for interviewing me, Dan- it was so lovely chatting to you! Thank you to everyone for listening as well- I know it’s easy for me say, but recovery really is possible (even if it seems like a long way off at the moment)
I tried so many thing to get well- sometimes I fell flat on my face (thankfully, not literally!), but some things stuck with me and worked. I’ve been recovered for 3 years now and am living a life I never thought I’d live again when I was first diagnosed. Come and say hello at http://www.conqueringfearspiritually.com to find out more about me.
In the meantime, thank you again to Dan and keep smiling everyone- it makes the day that little bit easier!
Katie xx
Thanks again Katie – I am getting messages from many people saying how much these interviews mean to them – you are a star! 🙂
Hi Dan,
Thank you for providing these recovery stories. I’ve been mostly housebound with CFS (and unable to work, have relationships, etc) for nearly 4 years; but, like most people, I can see that I was unwell long before. I’ve always been into meditation, exercise, and healthy eating, so those factors were never my trigger — it’s the deeper fear-based trauma response and the ANS dysfunction that you describe. I’ve made some good progress using the Gupta program the past few months (hooray!). I found Gupta before I found your work, so I’m using his methods before diving into CFS Unravelled (I found that if I throw too many ideas on my plate at once, I get overwhelmed). I did watch your video explanations, though, and it seems you and Gupta have some overlap with your theories.
Nonetheless, despite all of my hard work, I hit a pretty big dip this week after trying to simply have lunch with a friend at a quiet restaurant. It was too much of a step for me and I fell back to square one, though I am using my Gupta techniques and your encouraging website to help “float” through it as much as I can. Anyway, I listened to Katie’s story as hope to encourage and motivate myself through this dip. I am so very happy for Katie and her healing story. I also realize that everyone who has a CFS story has a very different story (with some similar themes). I also appreciate that few CFS recovery stories can be fully flushed out in one hour. However, not to take anything away from the amazing health Katie has achieved, but I found myself getting very irritated while listening since her level of functioning was so much higher than mine (it sounds like a walk around the block or lunch with a friend was rarely a milestone in her process). To hear she has been able to work full time, move to other countries, finish degrees, etc, all while having this illness made it sound like we have drastically different conditions. What I would give to be able to work and travel (I will one day and I will do cartwheels in celebration)! Again, I take nothing away from Katie’s hard work, but it was very difficult to listen to at times and left me feeling more doubting my own ability and less inspired that recovery is possible. I’m doing everything I can to change my core belief that recovery is possible, but it is very difficult when you’re isolating (living alone) and so cut off from the world. I wish there were different descriptions for CFS so that someone with Katie’s level of functioning wasn’t directly compared to me.
Thanks again for all of the good work you do. 🙂
Hi Natalie – thank you for your comment, I understand how you feel!
If you remember in Katie’s story, she spent up to around 20 hours in bed sleeping. I have not doubt that she had ME/CFS, but you must realise that many people don’t have steady symptoms. Instead, they get recurring bouts and sometimes, between bouts of exacerbation they improve their functioning. Also, many people with MECFS are extremely driven which is why they manage to do more than they might be exected to. So some even work part-time like Katie, and some even work full=time at times. In fact, this very drive is what hinders their recovery.
Yes, there is much overlap between many people’s thoughts – and I think Mr Gupta has done great work to spread his thoughts – I wish I had come across him during all those years of illness. It was only when I had worked out my explanation and knew what to look for that I managed to find many people with similar views! (which I found very encouraging at the time!)
Natalie, it’s a frustrating illness. I remember my own doubts for recovery despite being fully confident that my newfound understanding was correct. Whilst I was making progress, I had these setbacks that made me question everything (listen to my interview here: http://cfsunravelled.com/the-fibro-show-interviews-dan-neuffer/), but when I found out that others had similar thoughts to myself going back all the way to the 70s (if not earlier), I was very much encouraged. I am hoping that hearing these stories will give you just such encouragement. If you listen to Abigail’s and Lynn’s story you will again hear severe disability followed by recovery. Obviously their experiences included fibromyaliga pain also, but I hope you can see that we are in essensce talking about the same challenge!
I know it’s tough, I know it is a lonely journey. When you are with other people it can be even lonlier, because they never ‘get it’. Changing your belief about it being possible isn’t always easy at first, but it will get easier as you make progress. I wish you all the best success with you continued efforts and encourage you to keep going with the Gupta program, but perhaps also explore additional strategies as I have described to ensure you that deal with ALL your personal triggers. Good luck – <3
Hi, Dan.
Wow. Thank you so much for taking the time to write your nice feedback to my comment. I really appreciate your understanding and encouragement!
Katie’s amazing recovery story has continued to stay with me. I think the irritation I felt had less to do with the apples-to-oranges comparison and more to do with something deeper inside of me. I’ve labeled 11/2/09 (at age 29) as the “date” of my illness because that is when I was unable to work/walk/cook/plan/etc and my CFS diagnosis followed shortly thereafter. However, the patterns that Katie described were occurring in my life as well from age 19-29, and while I have fully understood that CFS (in my case) wasn’t an immediate onset, I haven’t fully accepted how far back my ill health goes. Hearing Kate’s story, I’m now tempted to say I’ve had CFS going on 14 years instead of 4, although I know labels are not important. 🙂 I always thought the push-crash cycles that I experienced were evidence of a person prone to long bouts of flu (and I thought this was normal — eek!). I achieved so much professionally in my early twenties (PhD, high profile jobs, teaching, research, lived abroad twice , etc), so it was hard to see the other side of the pattern for which I was being so rewarded. I know that an infant trauma is one of the major reasons for my driven conditioning. I also see in current blood work that I did have several mono-like infections in the past (this is scary — that I didn’t even stop long enough to know which viruses I had and how severe they were — I just labeled them all as flu).
Over the past years, I have come to fully believe that this illness is my prime opportunity to pull off all of the underlying beliefs of shame, worthiness, fear that fueled my “achieve at all costs so I get approval” attitude. So, Katie’s story is simply teaching me to envelop my decade before I realized I was on an unfulfilling life path…and my comment yesterday was me working through the jealousy I felt that Katie realized it sooner than I did. I’m now recognizing that I need not beat myself up for the conditioning I lived with in my young adult life — I thank it for protecting me but am letting it know that there’s a new plan in town and I need it to cooperate with a more loving, gentle life of ease, health, worthiness, and joy.
In short, I’m coming full circle on all of this. I’m glad I listened to Katie’s story and thank her very much for sharing it I’ll check out the other recovery stories you recommend. I also look forward to your book being available in bounded form (I do not have an e-reader other than my computer).
Thanks again for your encouraging comments. 🙂 🙂
Hi Natalie
Your experience mirrors that of many others!
“Getting it”, is a major step forward. To be frank with you, before I had done my research and put the pieces of the puzzle together, if someone had made a comment like that about ME/CFS/Fibro to me, I would have been highly annoyed thinking it is saying that Fibro is all in the head. Now, I see you comments as your profound breakthrough in your own realisation of what’s going on so that it gives me goosebumbs.
You get it! Good for you. 🙂
Hopefully you see now why so many people that recover say that their life is much richer and happier after their illness (as in after they recover), then before they got ill. Again, something that sounds annoying, but if you understand the mind-body connection in ME/CFS/Fibro, it makes sense. Although of course I must qualify that with the fact that not everyone has these same mental lifestyle challenges – which again is the reason why much of this gets dismissed. But I hope that people can see how the explanation in the video and CFS Unravelled pulls it ALL together.
Keep moving forward with actions every day – listen to Lynn’s best advice about “Make every choice ……”
Dan,
I appreciate your encouragement so much. Thank you.
I felt the internal tectonic plates shift a year or so ago and finally understood the deeper, underlying path I need walk in order to heal. Putting this belief into practice is where I get stuck. I have trouble knowing how far to push my boundaries, learning the difference between fear and intuition, and keeping the faith when I feel I’m setback to square one (I often feel ashamed for not “achieving” health when I “know better”). Gupta’s techniques have given me technical ways to implement my “a-ha” moments, and I’m hoping that your book has some good advice as well. As I mentioned previously, I wouldn’t be able to read it electronically and need it to be in print.
Do you have any further suggestions for implementing the healing process while I wait for the bounded book to come out?
Again, your passion for helping people recover from this illness is appreciated and inspiring. I look forward to giving you my full healing story one day very soon. 🙂 My healing is imminent, I know it (and if I’m frank, I also have moments when I doubt it….eek!).
Thanks again.
Natalie
Hi Natalie,
My advice is, listen to your OWN advice:
“Over the past years, I have come to fully believe that this illness is my prime opportunity to pull off all of the underlying beliefs of shame, worthiness, fear that fueled my “achieve at all costs so I get approval” attitude. So, Katie’s story is simply teaching me to envelop my decade before I realized I was on an unfulfilling life path…and my comment yesterday was me working through the jealousy I felt that Katie realized it sooner than I did. I’m now recognizing that I need not beat myself up for the conditioning I lived with in my young adult life — I thank it for protecting me but am letting it know that there’s a new plan in town and I need it to cooperate with a more loving, gentle life of ease, health, worthiness, and joy.”
Look at that and reflect upon your last comment! Can you see that you are still stuck in the old way of thinking? Remember that thinking like this doesn’t necessarily cause the illness, but once you have it, you cannot afford to think like that whilst getting well due to unbalanced ANS.
So let go of the shame, pressure etc. In my experience you cannot force the recovery, you have to let go and let it happen, it’s an attitude thing. The forcing and pressure causes relapses.
I recommend that you find the right professionals to address any emotional trauma if it exists in your past & that you seek the assistance of a naturopath to support you with diet and nutrition and other healing. But don’t get too serious or pressured about the whole process & keep going with your Gupta technqiue, but extend it to all your negative unhelpful thoughts. It is all about creating a ‘HEALING ENVIRONMENT’, so when you rest, ACTUALLY REST with no strings attached.
Take care,
🙂
Thanks for your comment, Dan. Doing my best to focus on the change and not the result. 🙂 Steven makes a good point below about getting out and about again. I get stuck there — the old patterns/conditioning are so hard wired that they sneak up on me without me even noticing. Thus why I (and everyone recovering) needs to be extremely patient and full of self acceptance/love during the nonlinear healing process. Take care.
Natalie, I can relate to you so much it’s eery actually and am wondering how you are doing now??
Wow, Natalie you have been so insightful and honest here. I am in awe of your ability to look inward, dig deep and analyze your emotional processing, own it, and deal with it. This is such a huge amount of progress in such a short period of time. You should feel extremely proud of your growth and celebrate-rejoice in this!! I am celebrating with you. Best in your recovery, Claudia
Hi Dan, thank you for pointing me to this from Twitter. This is great that you do this, thank you publishing recovery stories. It is only from these than we can find the way to help others recover. I have studied many stories and they all have the same elements (I describe these at my site).
I started studying the range of chronic fatigue and pain illnesses over 2 years ago in order to see if I could help someone with ME. I came to the same conclusion as you that this was a condition you cannot fight your way out of. My initial attempts helped people start to recover but the issue is then dealing with the tendency to overdo things as they start to get better. I describe this fully on a web site I built, as per yours, purely to get the word out and test my theory. And yes I do believe that recovery is a possibility for every one of these over-achievers who drive themselves into collapse and then keep trying to drive themselves out of it. And yes it is a physical illness, I believe it is a survival instinct shutting down what it needs to in order to protect YOU as an individual (hence why no two people have the same symptoms or degree of debility). Please have a look at my site. I welcome constructive feedback and if you feel the “story” of how the illness starts and continues doesn’t fit you then I really want to know (as it fits everyone I have discussed it with so far). Take care, Steven
Hi Steven,
Glad it resonates with your experience. I am not sure that the term overachiever fits with everyone with the illness, but there are certainly distinct personality traits amongst people with ME/CFS and Fibromaylgia and that is one of them. I agree that people don’t give themselves the opportunity to recuperate & doing so is key in recovery!
Thanks for your comment! 🙂
Dan
First off, Dan, you are an excellent interviewer, asking the essential and compelling questions and adding your own experience to the brew. Also, Katie is an articulate and intelligent guest who has an incredible story to tell. What she had to share truly gives one hope.
Where I am confused is the use of MECFS, ME/CFS and ME/CFS/Fibromyalgia. The confusion lies with the common usage of these terms, not so much just the mentions in the interview, although Katie referred to her disease as ME at one point, and CFS at another. I have CFS, and possible Fibromyalgia, but not ME. CFS, chronic fatigue, goes arm in arm with so many other diseases. I have Fibromuscular Dysplasia (abnormal cell growth in the muscular layer of my arteries leading to my brain that causes stenosis and other problems) and have been told by specialists that fatigue is just part of it. I can pinpoint the start of my CFS, though, when I had my first three heart attacks over 8 days time in 2005. So to use the terms ME, CFS, and Fibromyalgia interchangeably is misleading.
Having said that, what you are doing here with these interviews provides a beacon of hope to those of us who have had our lives turned upside down by ongoing fatigue.
Thank you for your positive feedback and your excellent question.
Many people suggest that Chronic Fatigue Syndrome and Myalgic Encephalomyelitis are different illnesses. However, I as many others am of the view that they they are actually just different names for the same thing. That is why people don’t get diagnosed with the two illnesses in the UK, they just get diagnosed as having ME.
The problem comes with the poor use of the terms and the focus on the symptoms! Chronic fatigue on the other hand is something completely different in my mind to Chronic Fatigue Syndrome. People can be chronically fatigued for all manner of reasons and hence the importance of getting thorough medical examinations. A good example of this was a girl recently diagnosed with CFS that died shortly afterwards from Leukemia! CFS or ME have a whole range of characteristics beyond fatigue, including not just a range of other symptoms and bodily dysfunctions, but also particular patters regarding the commencement of the illness.
The term Fibromyalgia is just as unhelpful in my view. Slightly better is Fibromyalgia Syndrome. Because these people experience pain as their predominant symptom (as opposed to fatigue), this has been seen as a different illness than MECFS. However, in my view it is exactly the same underlying root cause as I describe in the video explanation. But because the wider medical community hasn’t cottoned on to the mechanism of the illness, the root cause, they still treat these illnesses seperately. But if you see the link, the often seen transtition from MECFS to Fibromyalgia to MCS becomes clear.
Thanks for your comments! 🙂
I have recently read Dan’s book which I found easy to understand and had so many helpful tips and also an explanation of why I am ill in order to start recovering from Fibromyalgia. After following on facebook and twitter I came across this inspiring and very helpful interview. I thank Katie and Dan for sharing such an amazing interview as many people would not want to talk about how they got healthy again but interviews like this will help people find what they are looking for in order to recover.
Hi Sophie,
I am glad you found CFS Unravelled easy to understand. Good luck with your efforts, I hope the recovery stories spur you on to continuously better your efforts!
Kind regards,
Dan
I found this interview interesting, the part about learning how to relax especially. I know that it is doing me no good not being able to relax but learning how to relax is definitely a problem although I do feel I am making a slow progress. Also knowing when to stop doing stuff and rest is something i am working on at the moment, I am learning to recognise when I need to stop, the problem is on good days I feel like I want to rush around and get everything done, even though i know it may not be good for me to do so. The comments about soya were also interesting as I have been trying this but have felt uncomfortable afterwards, so I will stop this right away. I agree that you have to get to know yourself and how fibro effects you as an individual in order to find the right pathway to recovery.
My thanks to Katie and yourself for bringing this interview to me.
Thank you very much for your positive feedback Fiona.
I think when people understand the pathogenesis of ME/CFS, they finally recognise why changing their mode of operation is critical to recovery. Many people, especially women seem to come to recognise this by instinct, as Katie has done.
Isn’t it suprising how hard it can be to just truly rest! We are often go go go kind of people which is why some of us fall into this trap in the first time.
Good luck with your continued efforts! 🙂
It would seem from listening to this interview that Katie was very fortunate in that she had really only a very mild case of CFS, even if it took her 8 yrs to be fully recovered! And I don’t think she would fulfill any criteria for ME, which is a very severe debilitating condition! I have found over the years that people who have only a mild version of CFS do eventually regain their FULL health and activity levels, some within 5, most within 10yrs with or without any interventions, changes of any kind! Have you any recovery stories for those of us who have very severe CFS, continually bed bound, housebound for over 20yrs with very severe debilitating symptoms of fatigue pain etc etc etc, too many to list, AND who have done and continue to do all that Katie talks about plus more with physical healing, psychological healing, spiritual healing, belief systems, Amygdala retraining, diet, hope etc etc etc and still do not recover, let alone improve!! And there are many many many many of us around! Would love to hear some of these recovery stories! Thanks~
ps I don’t deny in any way the impact even mild CFS has on someone’s life and how awful it is and that these sorts of recovery stories are definately needed and a powerful beacon of hope! So keep up the good work there!
Thanks for your comment Lucy, your comment and questions are really pertinent and I think helpful to many others. So well done for being brave enough to ask the hard questions! 🙂
I personally don’t think that Katie had a very mild case of CFS. She was actually diagnosed with ME, but of course has not been able to share her full symptom list and medical history in this interview!
In my experience, ‘without interventions’ few people recover spontaneously, although it does happen. Every person I have spoken to that recovered from Myalgic Encephalomyelitis has made massive changes and taken lots of action to turn around their health. It is also my experience that few people are bedbound for over 20 years. For most people the illness seem to exacerbate in bouts and over time changes and also often increases in symptoms (eg. Fibro pain gets added or MCS start to occur).
But yes, I appreciate that even with people’s best efforts in the right areas, they often don’t have success. However, my view is that this is due to not using treatments and strategies that are effective for them – remember, whilst we are all the same, we are also significantly different in our histories. THAT IS THE FRUSTRATING PART OF ME!!!
The longer people are ill, the more complicated their condition becomes and ofthen the harder it becomes to recover. And along with that, their beliefs in the lack of possiblities of recovery from Fibro or ME/CFS become further entrenched. So convincing someone like you that one of the people that recovered from ME/CFS or Fibromyalgia REALLY HAD PROPER ME/CFS/FIBROMYALGIA becomes near impossible! I know this, because after 5 years I had closed the book on this and was fully convinced in my heart it wasn’t possible, so how are you going to be after 20?
My hope is to manage to collect so many stories, that even to the most beaten up long-term sufferer, the stories of recovery will start to open up doors of possibility. But it is important that we always avoid self-blame along with that! It’s easy to say, if it’s possible, what am I doing wrong – it’s my fault. That is not helpful, I think we have already had enough heart ache and don’t need that!
For what it’s worth, you can listen to Abigail’s Fibro recovery story here – she was ill for over 20 years (obviously not bed-bound the whole time!) and has made a near full recovery to have her life back.
Thanks for the question and staying positive. I hope you are helping spread the word about these! 🙂
This was 4 years ago, but sadly it came up in google search. You say avoid self blame, but then express that if someone doesn’t recover then they aren’t using the effective strategies. It’s subtle blaming onto sufferers of ME/CFS and perpetuates that narrative. You say the people who you’ve known to recover from ME/CFS have made massive changes and taken lots of action to turn their health around. That’s because whether healed or not most people with ME/CFS go to massive lengths to get better. Has no correlation. In fact I don’t know anyone with this illness that doesn’t try dozens of treatments. And still thousands are ill. But I guess all of those thousands just didn’t read your book. ?I’m all for suggestions, but when you start making comments that imply people aren’t trying and you don’t state the fact that your book doesn’t work for everyone then I’m out.
Well, by definition I think it’s hard to argue with that statement “if someone doesn’t recover then they aren’t using the effective strategies” – it is simply a fact, because the definition of effective is that it works.
The world blame is really quite unhelpful – I would encourage you and all people not to ‘blame’ yourself. It is empowering to take on responsibility, but that needs to be kept in context. For example, just because you haven’t found an effective treatment or engaged in it effectively, doesn’t mean you should take responsibility for the lack of results to the extent of blaming yourself. What good can come from that?
On the other hand, if you have a condition that is resolved by something simple like taking a pill without significant or severe side-effects and is known to work, then ‘blame’ yourself if you want to, but I think it would be better to just take the pill. Obviously that point is a bit mute with CFS/Fibro, because no such pill exists.
I agree, most people try dozens of people (including me and most people featured in these recovery stories) – as you know from your own experience, none of them really seem to work! This is why I don’t blog a lot about treatments – it’s a merry go round.
What I hoped that people learn from the interviews is ‘what do the recoveries have in common?’. The ‘massive action’ isn’t about trying lots of treatments, it’s about a wider and more consistent approach (in the vast majority of cases).
I think whilst you resist the idea of a magic cure (as you should!), you may still be hoping for one – you won’t find one in my book! (or in any other book, no matter what they promise) The illness simply doesn’t work that way. Not only don’t I state that “my book will work for everyone”, but that isn’t what the book is about. It’s about understanding why something works for one person and not another – it’s about tailoring your approach to recovery – it’s about stopping the endless search for some miracle cure!
how on earth is this possible? you cannot get well with energy healing! this is a serious disease! wtf…it is not psychological! people DIE from this!
Thanks for asking EXACTLY the right question!!! That’s what I wanted to know when I was sick. HOW and WHY? Like you say, it’s clearly a very serious physical illness (do I really need to rattle of dozens of serious measurable physcial dysfunctions?, I think we all agree it’s physical, it’s real and it’s very serious!).
There are stories of people recovering in all manner of ways (I won’t list them all here, but I dismissed many of them as rubbish early on because I had tried them and they didn’t fix me!). How is this possible?
Check out my video explanation to see if that gives you the answer. It is obviously not as comprehensive as CFS Unravelled, but hopefully makes sense to you. I think you are really asking the right questions here! Thank you.
thanks, Dan. i will watch your video. i know the trend these days is to treat the possible bacterial imbalances in the gut and fix “leaky gut”. perhaps stress plays a big part in gut inflammation and relaxing helps this. it’s just hard to make that leap, though, for me.
i suppose i have to accept that there are things i just cannot understand.
xox
Hi Sue, well – treating symptoms of Fibromylgia and treating symptoms of CFS can be helpful, to a point. Hopefully if you see the connection on how the symptoms feedback to the root cause, it will make sense to you!
In my view, there isn’t really a leap to make, the connections are direct and well understood. However, I appreciate that it is overwhelming for the layperson. Hopefully the video explanation or book will help you make sense of it!
🙂
I have had ME for close on 19 years, it has got progressively worse not only pain wise but in declining mobility. ( from crutches in the first two years, then to a manual self propelled wheelchair next being wheeled around by my wife when she came home from work. Now thanks to my former work charity funding I have got a good power wheelchair. I have tried so many life style Changes such as different foods cutting out certain food, certain exercises, but nothing seems to. Have an effect. I just have to rest & sometimes lay on the sofa recovering for hours if I just even fold up a towel. I used to play Tennis competitively, play table tennis & badminton. Cycle 16 miles a day to work & keep fit at the gym. I am now on 40mg citatapram anti depressants plus lots of other different meds for the pain, including accupan. I am currently following the guidelines of the booklet Pacing. For people with ME. It’s great that some people have found solutions to help them, Ive yet to discover one. I try to stay as positive as I can with the help of my amazing wife & through my best friend & incredibly grandchildren. I’m ecstatic for Katie but every persons situation with this horrible illness is different
Thanks for your postivie attitude! You are right, it’s not as simple as doing exactly what others have done to recover. That’s why I wrote CFS Unravelled and also created the video explanation to explain WHY AND HOW all the recoveries occur! Hope it gives you some insight! 🙂
Thank you Dan for your wonderful book and these interviews, and thanks Katie for sharing your experience. It totally resonated with me, although my case sounds much more severe as I have not been able to work for over a year now. After being bed-ridden, then home-bound (10 months at my parents where my main activity has been to walk 10-15mins every other day, sometimes inside the house…followed by months of physiotherapy)…I never thought I could walk without shacking legs and go on a bicycle for over one hour like I did yesterday night…:-)
I am slowly but surely recovering and strongly believe in the “relaxation response”vs. the stress response (that play a major role in any illness for that matter – see Lisa Rankin’s great book/work on that if interested). Before reading Dan’s book I had kind of figured it out for myself, so when I first read it, it was amazing to see it unravelled in such a logical/structured way…From the early days, I have activated the “relaxation response” through all sorts of practices, including meditation and sophrology that have been crucial (at least 1 hour/day of both for the past year!). I have also had a breakthrough with the Mickel Therapy that helped me shift my focus on “taking care of myself” as you rightly described vs. being obsessed and stuck with the fear of symptoms and relapses…
Now that I am feeling better (around 40%) I realize how difficult it is for a type A personality to continue being disciplined and radically change my mind-set and 40-years programming – especially when you spent months/years feeling you have missed on things, the first thing you want to do is do all the things you couldn’t do when sick…But that is a big mistake and I am working really hard on trying to remain committed to my recovery and not go back to my restless/over-achiever/activity-boulimic self!
One final thing I found useful is to stop feeling my body was the enemy. Most of my life I thought it was something external that I could not control and I was afraid of it. I realize now that we work together and my body is actually responding really well when I give myself the balance it needs.
In any case, thanks so much for sharing these experiences and I truly, strongly believe in full recoveries. Remember, those recovery stories are much less shared on the web than the painful stories of incurable illness, unfortunately.
Hi Sana,
Thank you for your wonderful feedback. Of course, hearing your improvement since reading CFS Unravelled was the whole reason behind writing it!
Hopefully you have taken my message on board that the relaxation response is just as much to blaim as the stress response – it is about changing the regulation of these not forcing it one way or the other.
Not only is your body your friend, but in a perverse sort of way, so is ME/CFS. I view they dysfunction as a protective mechanism that has lost it’s way. If you listen to the people that have recvoered from Myaglic Encephalomyeltis, you will often find that they change their relationship not just with themselves, but also their symtpoms. It is similar for people that recover from Fibromyalgia. You can’t control the pain per se, but you can change the emotional meaning of it. These subtle changes are important when trying to take advantage of brain plasticity!
I feel you have really understood my message well! COMMITMENT to follow through is absolutely critical. I can’t stress this enough!
Dan
🙂
Great interview but some of this is inaccurate. In 2008, I was diagnosed with Hodgkin’s Lymphoma, I had chemo and radiation and finally got my life and hair back. Chemo kills all the bad things but also all the good things. In 2010 I had the lap-band surgery to lose weight. I was excersizing like crazy and lost 80 lbs. to only gain back 80+lbs after I started getting crazy pain and fatigue in 2011. I was diagnosed with fibromyalgia in 2012, my Rheumatologist said it was indirectly related to my fibro. I am not one who believes in raw, vegan/vegatarian diets. I have tried them and not only did I dislike it, it was expemsive and had no affect on my body. Glad it works for some but one size does not fit all. Sometimes things can only be maintained or relapse but total recovery may not be possible for all. I am very happy for you and Katie and wish you both the best!!!
I am sorry I meant to say *** indirectly from my cancer…
Thanks for your comments!
Great interview,almost all symptoms resonated,currently trying to adjust my diet to see if anything works,but even to know I’m not imagining things and someone has an idea of these horrible ailments. I’ve gone from under to over active thyroid in last few years,awaiting yet more bloods to find out why exactly my body is attacking me in this way.
Hi Jessie – whilst diet is helpful, diet alone is not going to be enough. If you have ME/CFS, you need to focus on addressing the triggers behind the root cause of the illness. Check out the video explanation for more details here : http://cfsunravelled.com/video-explanation/
It’s always good for people to keep an open mind when it comes to Fibro and similar conditions. You just never know what’s going to work for you till you try it.
Glad to hear that Katie has found relief.
Thanks for your comment! 🙂
Rona, this so true! There’s no ‘one size fits all’ approach (unfortunately!) and you really don’t know what’s going to work for you until you try it! Thank you for commenting Rona!
Katie x
I’m 16 years old and I’ve had fibromyalgia & cfs for a couple of years. Being so young makes it very difficult because it keeps me from going out with my friends and participating in after school activities. I was told that this was something that i’m going to have for life and there is nothing i can do about it except suck it up and deal with the pain. No one ever seems to understand the pain i’m in and they think i’m just over reacting. The main symptom i deal with is joint pain (fingers, ankles, elbows, neck, shoulders, hips, knees, ankles). This pain is so intense that I have cried on a date because my wrists hurt so bad. (embarrassing!!!!) I also have dizziness/fainting, raynaud’s, IBS, dysmenorrhea, migraines, severe fatigue, muscle pain, puking whenever i exercise, RLS and aching all over my entire body all the time. Every time i see a recovery story it restores my hope. Because i have lost hope and spent countless days in bed depressed because of this illness.
I recently started a “treatment plan”. I take guaifenesin twice a day and avoid salicylates. Hopefully it works and i’ll let you know if it does!!!
Thanks Mr D. Neuffer for restoring my hope for recovery!!!
Thank you for your comment Sarah. Recovery from ME/CFS & Fibromyalgia is a challenge, but clearly people manage to recover.
I am glad you found hope and wish you luck with your new treatment plan. In CFS Unravelled, I speak about my explantion for the cause of the illness and the importance of a multi-lateral approach that addresses the various triggers of the root cause. Hopefully you have taken this on board and are doing everything you can to improve your health.
Stay positive and remember to speak to your family and trusted friends about your feelings and follow the advice of your doctor.
Thanks for your positive feedback and any help in spreading the word to others who perhaps have also lost hope and need to refind their hope!
I have CFS for 18 months now and have been finding it very tough going and been losing hope. Like Katie I can’t plan anything as one day I might be good, and the next awful. I have much of the symptoms that Katie had, irritable bowel, can’t handle noise or crowded spaces etc etc. This interview actually really helped give me hope. I have lost everything because of this illness, my business, my partner, my car, my social life, even some friends don’t call anymore, but I am heading back to college in September to venture down a totally new path and I am really looking forward to it. By going to college for 4 years it gives me time to relax into the illness and take time out to get over it. Thank you so much Dan and in particular Katie as your story resonates with me so much! Now begins recovery!
Thanks for your comment.
That’s exactly why I started these interviews: to help people regain hope and remember their goal – RECOVERY!
When we lose hope, we tend to get stuck and stop taking postive action forwards.
Wishing you all the best!
Diarmaid,
Wishing you all the best for the future. So great to hear you’re taking positive steps forwards!
Katie xx
Hi, I thought it was a good interview.. I am glad to hear that Katie is doing well. I was diagnosed with FMS in 1995, Lupus and Rheumatoid Arthritis in 2000, and a few other Auto-Immune diseases. I have tried a few treatment plans. It is very hard to treat my CFS because some of my other conditions contribute to it. I have good days and bad days. I get plenty of rest and if I do not feel that I am able to do something I do not do it. I had to change my life completely and it took me a long time to come to terms with that. I am 42 years old now and I take each day as it comes. I have eliminated as many triggers as I could. Changing my diet did not work for me. I an glad it works for some. It is nice to hear stories of encouragement. I have accepted my life, my pain, etc. I have a positive outlook and that helps me with my attitude. I take it day by day and most importantly I try to stay positive. I have a great support system behind me. Thank you for sharing your and Katie’s story. Stay positive. Kathy
Hi Kathy,
Thank you for your positive comments. I hope you find the video explanation and other resources insightful and wish you all the best in your recovery!
Regards,
Dan
Hi Dan,
I am 28 years of age and was diagnosed with CFS & Fibromyalgia. I actually consider myself a CFS/Fibro infant because I have only had the illness for 2 years. My journey started similarly to many others. I was maintaining a 3.97 GPA near the end of my junior year at a University, I was running an appraisal firm often working long hours into the morning, had a vaccination a couple months before symptoms began, had very poor dietary habits, and had my first child on the way. 2 weeks after my wife delivered I entered a relaxed state for the first time that I could remember in years, and then abruptly passed out. After waking my body was never the same.
I only found your website a few days ago after a relapse. I had made tremendous strides battling this disease going from about 5% function to about 80% function, and a reasonable reduction in pain in less than 2 years. I achieved this level of function through aggressively changing my diet, proper supplementation with vitamins and minerals, and exercise. I experienced my relapse because I exceeded my boundaries by beginning to exercise as a normal person would and also beginning to work very long hours. I am now at about a 50% activity level. Before the relapse I started getting new pain symptoms in unfamiliar areas of my body, but I ignored them completely as I decided that I was no longer going to let my illness dictate my activity. This was a big mistake in the short run, but a blessing in the long run.
I have now found this amazing site with so many wonderful stories that have helped me to regain my confidence and refocus. It is also granted me the realization that I must devote time to creating a relaxation response through yoga and meditation. This is something that I feel is imperative to add to my regime as I make my way back to the recovery phase.
It is very interesting to find that your theories of what causes the disease match mine. My very first symptoms were chronically tingling feet and the very first time I began to experience this symptom (before passing out), I felt intuitively that I needed to change my thinking from constant worry to relaxation (something I still struggle with.) I just somehow new that my constantly stressful lifestyle and inability to cope with stressors properly was making me sick. However, I did not heed the bodies warnings, and got very sick. Moreover, A highly acclaimed doctor in the USA gave me this diagnosis, and is doing some very interesting research that supports your theories. In my first visit with him he hooked me to a machine that measures the rhythm of the heart. He placed me in a dark room for 20 minutes, and told me to relax as if I were going to sleep. The results of the test showed that the rhythm (not speed) of my heart matched a pattern consistent with always being in “fight or flight,” and this is consistent with all of his other patients that have been diagnosed with CFS. I thought I would share that as you may find it interesting.
Lastly, I want to thank you for all of your inspirational work, and want you to know that when I am fully recovered I will be happy to grant you an interview if you are interested. Thanks again!
Hi Eric,
Thank you for your comments.
There is as much research as you want to support the explanation offered in CFS Unravelled.
However, as I describe in CFS Unravelled, recovery is not about meditation, relaxation and diet alone. It is about ‘rewiring’ the nervous system whilst healing the body. Also it is my view that ANS profile morphs over time in people with ME/CFS & Fibro and that sympathetic dominance can be countered by parasympathetic dominace – but misregulation in any case.
It’s great to hear you are finding the website so helpful. I look forward to publishing your recovery story!
Warm wishes,
Dan
Hi Dan!
(This is a bit long, ooops!)
Well I’ve finally got round to listening to a full interview and I have to say it was inspirational. I have really taken on board much of what you’ve been saying in your book which is referred to often and I know I am in the recovery stage. Thousands of thanks to you and your interviewees for spreading the word!
The thing that has struck me most about this page is not the interview alone but some of the comments made which kind of confirm much of the thoughts about personality type (trying sooooo daaaamn haaaaard!) and it’s interesting to note the levels of anger and confusion about things that are being said.
My heart goes out to these people and I myself have been an incredibly angry person in the past, and I learnt that underneath that was a great deal of FEAR!
I defy anyone to say that it was nothing serious as I recovered from Schizophrenia manifested in my twenties but it’s taken years of fighting tooth and nail to do so.
I know what it is to be at war with yourself.
HEALING YOUR-SELF IS AN ART FORM!
…and involves lots and lots of honest and humble pie….and care…and…..
Our culture breeds this fear and in terms of recovery it is wise to take being angry as a sign of this underlying fear. Unfortunately when we are in it’s grip, and with brain fog to boot, it is hard to read the obvious at times and I can understand how we can remain stuck for seemingly endless years.
To those of you who are just hopelessly stuck, I would say go deeper.
Cry more. Feel more. Love more. BEEEEE More!
BREAK OUT OF THOSE CHAINS!
Release your fear, firstly by being brutally honest with yourself and going into the dark corners of your psyche. I find journaling helpful for this. Splurge everything!
The mind controls us (including our bodies in very complex ways!!!!!) until we control it!
Thousands of years of meditation masters and yogis are not wrong; the untamed mind is our enemy when it is filled with fear and whilst living in fear and anger we may as well be in prison for it is the worst place on earth to be…yes, this is what I believe they invented the term Hell for!!!!
GO AND KICK THE ASS OF YOUR FEARS!!!! 🙂
You must keep searching for the light until you find it. Please don’t give up people. It is serious, but when you finally see the light shining through the chinks in your prison, you will know that every ounce of effort was worth it.
YOU ARE WORTH TRYING FOR, AGAIN AND AGAIN!
PLEASE Don’t misinterpret these well meant sharing’s of advice and wisdom just because it’s coming from a more leftfield place than you are used to (i.e. they are meant with love and compassion, not to feed your persecution complex and before you shout at me, I have one too, if I let it out!) and do not close your hearts and believe that it can’t be you sharing your recovery story…it really doesn’t matter, in that sense how long you’ve been ill;
THE FIRST STEP TO HEALING YOURSELF IS GIVING YOURSELF PERMISSION!
Love Yourselves…like your life depends on it…because it does!
Peace & Love
Phoebe
Hi Phoebe
Thank you for your heart felt words.
When we are so ill, it can become all perfading, and CFS/Fibro in particularly starts to ingrain itself into every aspect of our lives.
To make changes, it can take a lot, especially when we feel so diminished. Healthy people rarely understand how hard this can be.
Thanks for your wonderful motivational message and best wishes for your recovery!
Dan
🙂
Hi Dan,
I suffered ME/CFS for 8 years and slowly bit by bit made a recovery by changing my lifestyle and relaxing into things,just as you say. I’ve always had a good diet. I’d not had a relapse in 3 years. Then I met a lovely man, fell in love, life was good.At that point I could have done the same video as Katie.
5 weeks ago I’ve just had a nasty relapse, can’t put my finger on what caused it other than swollen glands and a particular type of bug which didn’t come out in a proper flu or cold or anything much, just feeling sickly and a minute wheezy feeling in my chest.
I think that this virus can flare up at anytime, and all I can say is that on the onset of feeling weak we have to go straight to bed and treat it like flu. All I did was drive to the doctors but that set off muscular pain which hasn’t gone away yet.
So just a message to Katie- do be aware that it could reoccur and watch for early signs!
Hi Sue,
Sorry to hear about your relapse. Yes, they can occur, which is why I wrote CFS Unravelled because I believe that if have a deeper understanding of how the illness works, then not only are you much less likely to relapse but recovery is much more easily repeated.
It is my view that the looking out for early signs you mention directly feeds back into the central mechanism of the illness.
Hopefully you have watched the free video explanation and that makes sense to you.
Thanks for your positive comment.
Cheers,
Dan
Hello Dan, First of all before I say anything else I have to challenge your comments about vegetarianism. I am a vegetarian and belong to a worldwide spiritual organisation of at least a million people. We are all lacto vegetarians ( abstain from flesh fish and eggs) I can assure you that there is by no means an epidemic of ME within our ranks and that most people are as healthy, or as unhealthy as the next person. Many people have never eaten meat in their lives and are not suffering from ME or any other illnesses that are peculiar to them. Flesh products only actually contain 25% protein and the notion that vegetarians are necessarily short of protein is untrue.. I can get more protein from having a protein shake than you would from a piece of steak. I was in fact a meat eater at the time I became ill. I used to have protein shakes regularly (my choice was a Nutrisport pea protein powder) but do not now feel it makes any difference whether I have it or not, in fact I wonder if it bungs up my digestive system, but that is just about where I am at with my digestion. Sorry, that is just a rant that I had to let out.
I have enjoyed listening to these stories, in fact have had the feeling that I was in the room with a group of friends who understood where I was at.I found them inspiring in places, and heart rending. However I am not left with the feeling that there was any identifiable reason why these people recovered. Yes they were determined, but I think also a lot of other people are. I recently read your book, after many years of not reading any books as opinions on ME are so varied and conflicting and also I think there are many many ametuers out there proporting to have the answers when they do not at all. Anyway somehow I came across your book on Amazon and was pleased to know of your scientific background and felt it was worth a read. I ploughed through nit desparate to get to your conclusion. Your arguments seemed very plausible and I was impressed with the science. Anyway it has made me feel a bit more inspired to think that recovery is possible, but I’m now still feeling that it is all a little bit vague and perhaps there is luck involved?
It is great to have your video presentations though, much easier than the book. Just a little about myself. I belive I have probably been ill for 20 years, diagnosed for 15 with Chronic Fatigue, though as for many years severe chronic pain was a feature of this I don’t feel that label was adequate. I am what would probably be described as improved. I believe I manage my symptoms well and have reached some kind of plateau. I’m not confident that that is going to change though. Your book did give me more hope. I feel that I am where I am at because to some extent I have chosen to be, but there is a ceiling through which I cannot break.. It all seems too complicated. I do however take on board (which I probably already knew) the issue about prolonged stress, which I definitely had prior to illness. I am a hero of emotional stress if that makes any sense, when the going got tough, many times over, I was going to win through, well I had to or go under, though in the end I obviously went under in an unexpected way . That’s probably enough said for now. I have appreciated your book and this website
Thank you, Patricia
Hi Patricia,
Thank you for your lovely comment.
I hope my comments on vegetarianism and ME were not offensive to you.
My view is based on my experience of meeting a higher than average proportion of people in the ME/CFS community that are vegetarian, which of course is not a scientific conclusion and merely anecdotal. However, this is still my experience and very noticably so.
That doesn’t mean that there is an ME epidemic amongst vegetarians. And yes, I am sure many vegetarians get adequate protein. However, in my experience many people have a poor diet, whether they are vegetarian or not. And many vegetarians in my view eat less protein than they need. The issue and link to MECFS is twofold – 1.) they don’t get the building blocks to build the neurotranmitters and support methylation adequately (tyrosine, phenylaline, tryptophan, methionine, and B vitamins such as Choline and B12 etc.) – 2.) in order to make up their calories, they eat grains which are highly inflammatory and create more pressure on insulin receptors.
The problem with most legumes (this comes from someone who grew up eating lots of lentils and loves them), is that again they are not a natural food. So whilst they offer some protein, they bung up EVERYONE’S disgestive system, adding more pressure on the body.
I really appreciate your comments about the identyfiable reason for the recoveries. This is why I am now working hard to create a video training program that fills in the gaps that CFS Unravelled left. I totally understand what you mean about LUCK and the glass ceiling. Sometimes the reasons for these are also more easily identified by an outsider than ourselves. But I urge you to persist and maybe consider re-reading CFS Unravelled.
It can feel all to complicated, but I urge you to stick to your insincts and work on those issues you think are most relevant, including the emotional challenges that I am sure you will overcome.
Best wishes,
Dan
Well, Dan, are you prepared to tell most of the entire population of India China, Africa that grains are not a natural food, and the Italians that Pasta is not a natural food? What makes a food natural? Would it be natural to find a rigid corpse of an animal by the roadside and think, yummy, I want to eat that? I choose not to feed on smelly corpses I don’t think that is unnatural. Strongest animal on the planet, could be elephant or gorilla, what do they eat? Leaves. Do human beings spy sheep in a field and instantly feel the urge to hide in the bushes and stalk and kill them? On the whole, No!
Well, a natural food to me is a food that humans found in nature and were able to eat. So fruits, vegetables, meat, eggs and seafood. Grains would only have been eaten whole and in tiny amounts and dairy products of course are not natural either (it may have existed in Greek mythology, but suckling is usually restricted to babies in nature and only to one’s own species – 🙂 ) However, I understand that there can be significant nutritional benefits to many dairy products, depending on the quality and how processed it is. But of course, anything in the supermarket, including milk, so highly processed and the molecules barely resemble what came out of a cow!
I would differentiate grains from legumes. What I am saying is that grains are laden with highly inflammatory omega 6 fatty acids and that inflammation is biggest cause of disease in the modern world for humans. Until recently (about 10,000 years ago), this was not part of the human diet to any great extent. Legumes, which are very nutritional, but cannot be digested by humans. That is why we boil them a long time to try to make the digestible, but we only partially succeed.
Your decision to be a vegetarian has to be respected. Besides any personal reasons (which on their own are enough) not to eat meat, you can really make a case when you consider the poor quality of most meat which is often polluted.
However, this has been on my mind for some time, because like I said, the ME/CFS population appears to have a lot more vegetarians than the standard population has, and I can see why based on the dysfunctions and challenges that occur. So I am keen to help vegetarians with dietry suggestions. However, especially where people are lacto vegetarians, I am unaware of a diet that provides the necessary nutrients in appropriate amounts, especially given that I am very strongly against any non-fermented soy products.
Patricia, please don’t feel offended. I really appreciate your decision not to want to eat meat. My only point was that I think it puts pressure on your health and doesn’t provide adequate nutrition for recovery easily. Also keep in mind that we are different from elephants and gorillas. If you ate a diet like them, you could not survive because our physiology is different.
You obviously would have a lot more knowledge and skill in terms of how to build a healthy lacto vegetarian diet than I. Perhaps you can outline some suggestions or ideas that are helpful for others?
Hi Dan, just to say I am aware that these comments are following on from Kates interview and to say thanks to Kate and that her story was very interesting. You know there are a lot of fads about diets these days many of which are totally unproven. I first became a vegetarian at age 15 (in the summer of love…well ‘1968 to be precise) I am speaking of vegetarianism, not a vegan diet. We had milk, cheese and of course the vital veggie staple, Marmite, for the B vitamins. The problem in my book with cutting out dairy is lack of vitamin D, which of course can be obtained from sunlight, but in dark European countries this does not always get us through the winter. In fact during the 1930s an Aunt of mine actually suffered from rickets due to poor children only being given the cheaper skimmed milk. From that time many food s were supplemented to prevent these problems and from then my grandmother always bought butter rather than margarine as she said it was cheaper than paying for a doctor.(pre the NHS here in the UK). Lack of vitamin D has been implicated as a factor in Multiple Sclerosis, so I think it is important that we at least try to get enough of that. As far as what is generally considered a healthy diet, the concensus is coming down heavily on the side of a plant based diet. No medical authorities are prescribing huge amounts of meat to improve health…her is a quote from the Vancouver Sun which I came across which illustrates this….adequate protein does not mean that we need very large amounts..oh and by the way, I think I can definitely say that I know more vegetarians than you do.
Anyone who thinks diet doesn’t play a role in cancer needs to think again, says Cheri Van Patten, a registered dietitian with the BC Cancer Agency.
“So many people say diet doesn’t prevent cancer … but if women adhere to specific recommendations, the risk of cancer is lowered.”
Van Patten says recently published results from a large U.S. study show that following cancer-prevention guidelines not only lowers the death rate from cancer, but from all causes.
She points to research published in June’s issue of the journal Cancer Epidemiology, Prevention and Biomarkers which describes the largest study of its kind, involving 111,000 men and women who were aged 50 to 74 at the beginning of the study in 1992-93. Participants answered a questionnaire about how many of the American Cancer Society guidelines they followed in terms of a balanced diet, maintaining a healthy weight and having no more than one drink a day. (All subjects were people who had never smoked or were former smokers.) The more of these recommendations participants followed, the more likely they were to be alive 14 years later:
maintain a healthy weight.
get at least 30 minutes of exercise five times a week.
consume a healthy diet based mainly on plant sources.
drink less than one alcoholic drink a day (for women) and less than two (for men).
When it came to breast cancer, women who kept a normal weight – a body mass index, or BMI, between 18 and 25 – and drank the least had the best outcomes, said Van Patten.
There are more than 100 studies on the alcohol-breast cancer link and about half a dozen meta-analyses that have crunched the numbers from multiple reports.
“No matter how you slice and dice the findings, all of the meta-analyses have shown a significant increase in breast cancer risk associated with alcohol consumption.
“Some recent studies have looked at light drinking – defined as less than one drink a day – and even those studies associated it with a small, but significant, risk,” said Van Patten.
As for food, eating five to seven servings of fruits and vegetables a day along with other high-fibre, unprocessed foods like whole grains, beans and legumes are the mark of a healthy diet.
Van Patten says nutritionists have long been preaching this message, but cancer-prevention programs are now also focusing on reducing obesity because of its prevalence in the developed world where breast cancer rates are highest. She notes that a high-fibre diet of mostly plantbased foods can help people keep a lower body weight by making them feel full.
© Copyright (c) The Vancouver Sun
Best Wishes Patricia
Thanks for your comments Patricia.
Wholeheartedly agree that diet is probably the most important thing about health living!
🙂
I would love to have listened to the whole thing but it was just way too long.
Good thing is, you don’t have to listen to it all at once. If it helps you, then it’s worth the effort right? You can always continue where you left off, which is why I give you full control of the player!
I was told by a doctor that fibromyalgia is not a disability! that the disability occurs when you stop being motivated and stop being active.
What happens to those days when you Don’t even have the strength to get out of bed because the pain is so severe?The disability board for Social Security just turn down my application. the letter stated that my lupus and fibromyalgia and CF is not considered a disability.that there is no reason I should not be able to go back to work even part time. I disagree there are days I cannot even get out of bed because the pain is so severe and walking or exercising even water aerobics makes it worse. and people wonder why I am so depressed and why I don’t give a damn.
Hi Jeannie – sorry to hear about that. Disability in my view is not related to any illness. Cancer, stroke, heart attack – none of these are disabilities either.
I disagree with your Dr on the definition. A better definition used in disability insurance is when you are unable to perform your usual duties at work.
So yes, people with fibromyalgia might be able to work part-time, or even full-time. But also, they may not be able to work at all.
You judgement seems unfair, but often it is about persistence and changing your approach in order to have success. The KEY is NOT to get upset or emotional. You have to dissassociate yourself from the problem, otherwise you will quickly run out of steam to keep fighting the fight and/or make yourself feel worse!
Good luck!
nothing new here i`m afraid,i`ve done everything u mention & many more….i`m still suffering after 25 yrs of this crap ,the medical profession are useless and detructive for this condition,i spent 15 yrs researching intestinal problems and another 7 learning differant types of hypnotherapy & 100`s of hours of eft, nothing cures ME , i think you are giving false hope,i gues i`m losing mine. the cruelty of the medical profesion should never be forgiven for what they have done to us & the MS people before us………….
Hi Stu – I get your frustration and you are right, there is no one fix all cure. But I don’t agree that it’s false hope, after all, people recvoer from the illness all the time even after decades of being ill. But if you listen carefully, you will see that they address their personal triggers and dysfunction whilst also having common strategies that help normalise their nervous system. I understand your feelings about not having been treated well, but that probably doesn’t support your health – try to find ways of letting go of it (I know that’s easier said than done sometimes, but persistance pays), but in the end only you are hurt by it, they are not. All the things you mention can be helpful, if applied appropriately. The key to ask yourself is WHY did YOU get ME, what triggered your illness. And what are your biggest challenges now? Those are usually good areas to focus on! I wish you all the best – you might find this helpful.
I find that all the criticism and narrow mindedness regarding this approach to getting better is laughable! People dont want to believe that the cure of this disease is some thing that is so in their control that they belittle or make fun of it. I would ask all those people that have been sick so long, how is your current treatment going? I think that the true cure for this disease takes so much effort, belief and huge lifestyle changes that most people find it easier to say its not going to work instead of getting out of their comfort zone and making the very difficult choices to get better. Once I truly decided to get better and believed in my ability to get better is when I have truly made huge strides towards full recovery! Set backs? Yes! Permenant or long term set backs? No! I truly believe that fear of huge changes with no results is what hold people back from digging in and working hard to get better. Mainstream medicine does NOT have the answer! Sorry for the harsh words but that is what it will take for some people to get off their butts and get it done!
Well Jeff, many people certainly understand where you come from. I hear similar words from people that have recovered all the time and unfortunately for many people it’s not until they are pushed to the brink by ME/CFS/Fibromyalgia that they COMMIT to change. Thanks for your comments.
Hi I’m a 13 yo girl who has cfs and I have just started school holidays and I have crashed. I tried not to push myself too much, but I feel awful. I often only do half days at school and I have to go so do u have any tips on how to avoid crashing.
Hello Ella,
I’m sorry to hear that, it sure is frustrating.
Until we recover, we seem to have to pace ourselves so not to crash too often.
The hard thing about pacing can be that we not just have to slow down when we feel unwell, but actually also not go too hard whlst we feel better. That’s where many of us get caught out.
Also Ella, it’s not just about overdoing it physically, but also, we need to look after ourselves mentally. Many of us with ME/CFS/FMS have a habit of striving for too much, trying to be and do too much and sometimes being a bit harsh with ourselves. So focus on being kind and gentle with yourself.
Hope you bounce back soon.
Thank you for your advice.
What a load of wishy washy bilge! In this interviewI have had CFS for 30 years,. Today I am in the middle of a relapse. I got up at 1.15 this afternoon. Watch box sets on t.v. all day long? If only! Telly is not at all possible when I have brain fog. Going shopping? No, confined to the house all day. Cleaning? luxury! My kithen floor hasn’t been done for weeks, I just about managed to load the top drawer of the dishwasher before going back to bed. Allow myself to rest? I do it all the time – a little knitting, Radio 4, Classic FM audiobooks break the monotony at the moment when I am nt just lying there. I had hoped this site might prove useful but I fast forwarded it and then switched it off before the end so as to expend no more energy on it.
Hi Julia – thank you for your comment.
You know, I can totally understand how you feel, but I am surprised you would judge the website by an interview.
However, I think you missed the point. Even in your comment, you point out all the things that you haven’t done – it’s not very relaxing is it. The point was that resting for recuperation, has to do with a mental attitude as well as whether we physically stop. But of course, it’s hard to do that when we feel it’s a permanent situation.
I always say to people, only someone with CFS really knows what it’s like. But you know, I sure think that being sick for 2-4 years is different than 10 and again different than 30. If you listened to Katie, you would have heard her saying that she was basically bed-bound and not able to do anything, yet she was not resting.
Hopefully some food for thought! 🙂
Hi, I’m Ella, the 13 year old girl who posted previously. My parents and my school are discussing my schooling and my parents were going to talk to them about me having the rest of the term off to recover. Even with chronic fatigue I get A’s and B’s and going to school seems to make me so much more tired. What do you think?
Thank you.
Hi Ella
You do very well to score such high grades despite your challenges.
You know, it’s important to have a flexible approach and be open to trying different things.
Your parents really understand your situation best and of course have your best interest at heart. So I would encourage you to go with the flow and your parents lead. 🙂
I was diagnosed with CFS in my early 30. I had 3 small children and worked 12 hour nights as a nurse. Remission came slowly and I don’t feel that I ever regained my previous vitality. I’m 60 now and for the past year have been symptomatic again, struggling to work, help my daughter with her two boys who recently lost her husband and attending things in the evenings when I would rather go home and go to bed. I know it is difficult for family and friends to understand who I am right now. It’s hard for me to grasp for any bit of energy and sense of well-being. Listening to your interview helped. Hopeful!
Glad you were inspired, Deborah. Have you listened to the explanation videos about the pathogenesis of the illness?
Did that resonate and help make more sense of HOW and WHY people recover?
Hi, I found it interesting about your comment on people with CFS being more likely to be vegetarian from your experience. This fits with some of the things I have realised on my own recovery path. I would be interested to hear your thoughts on why this may be.
Hi Jack
I discuss the connection between diet and recovery in some depth in CFS Unravelled.
However, the connection here is multi-lateral in my view and I’ll summarise.
1. vegetarian/vegan diets often are very high in simple carbohydrates to make up the calories – this can lead to triggering of the nervous system
2. they are often lacking important fats and proteins in sufficient quantities to make up for the deficits experienced during the initial trigger of the illness and ongoing triggering whilst they are sick
3. they are often very kind/sensitive people who deeply care about animals and the environment and back up their beliefs with action – this kind of person can sometimes be more vulnerable to psychological stress as opposed to a person that perhaps has less empathy
Thank you for this video interview Dan, and thanks to Katie for sharing her experience. I’m 4 months post recovery after decades of being sick with ME/CFS/FM & several other diagnoses. Hearing Katie’s narrative added greater clarity to my own timeline, and motivated me to document mine once more for recall purposes.I think I see the past clearer as I move forward in my recovery. Although our sickness stories are quite diverse,I can relate to some of Katie’s recovery path. The spiritual healing aspect,the idea that not accepting where we are causes us to push/crash, and the expression that by accepting the illness and embracing the idea that recovery is possible we somehow are propelled forward. I’m not suggesting that this illness is psychological or that simply believing so will cure it, but as long as we resist the possibility of recovery the solutions won’t likely be available to us. I felt the shift within myself. I still shake my head every day because I can’t believe how close I was to having restored health, but at the same time I felt so far from it. Thanks again for this powerful dialog.
Hi Claudia
That is so well put – thank you for sharing your words of wisdom. 🙂
in the interview you mentioned, that tofu is a carcinogen. that was a common opinion, even among doctors, for quite a long time (so, no blame on you ;-)). several new studies have shown the opposite. soy (and tofu), can in contrary prevent cancer (in women and men). and this is what all leading experts in nutrition promote nowadays and they all recommend tofu as an excellent plant based source for protein (like all other legumes like beans, lentils, chickpeas). check out this:
https://nutritionfacts.org/?s=soy
Hi Enrico,
Yes indeed, the science on this seems to be flip-flopping over the years.
Certainly seems that there is a lack of consensus.
Thank you for this Katie and Dan. Some parts massively resonate with me, especially the drive to constantly busy and never allowing myself to stop and just rest. Even if I sit down I have to be doing something to not feel useless. I’m also a high school teacher incidentally!! Lots of gems of wisdom here – thank you so much. So glad you’re better now Katie, enjoy!
Hi there Dan!
is it possible to get the very intersting stories in text? I have a hard time understanding talk.
Yes, many of them (not all) have transcripts, look underneath the video.
Not sure what is going on 2 days after the second vax physer I got sick very tired did not find the words to complete a sentence went off food could not even look at food it’s been 3 years lost weight absolutely no energy there is so much neglect as far as housekeeping I do not have the energy to cook joint pain. My son says I have given up on life he does not understand I forget so much I tell him he has to cook he is a adult and lives with me I tell him I just do not have the energy. I hate the sun I sit for a couple of hours in front t of my tablet it takes my mind off of being sick then I have to lie down just have to. My doctor does not talk about it while I am explaining how I feel no feed back I just wanted to know is it long haul covid or vacine problem I sleep 3 hours then up for 3 hours the world can wait I do not have the energy. What causes this never heard of this 10 years ago
Ask your doctor about a diagnosis of ME/CFS.
The book and program are designed for people with that condition.
So sorry you have had such a difficult time.