Katie shares how she stopped MECFS relapses to make full recovery from MECFS

Powerful insights for recovery that might sound subtle, but are really profound!

Katie Manning shares how she recovered from M.E.

For Recovery Story Disclaimer, please see the main page!

It’s easy to believe that Recovery from ME/CFS is not possible.  After all, if there is no agreed upon cure for ME/CFS, how can you expect to get well, right?  Such beliefs become stronger and get reinforced when we are frustrated by our recovery efforts, time and time again.  When we recover 70%, or maybe even up to 90%, and then we have a relapse, AGAIN!  I remember I used to feel like screaming during those relapses, even when my recovery was much less than 90%!

Katie shares how she had set-backs for years, and then how she finally broke through and stopped the MECFS relapses to achieve a full and lasting recovery, which she has been enjoying for over 3 years now.

Some of Katie’s thoughts and techniques were exactly what I used to recover, 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 listend to the interview!

How to Recover from ME/CFS

Here are some interesting highlights to look out for:

  • What is similar in your experience of the illness when you first got sick?
  • Can you identify early warning signs like Katie?
  • Did you have similar frustrations to Katie with family, friends and doctors?
  • If you are vegan or vegetarian, is your diet optimised to include sufficient fat and protein?
  • What was Katie’s key to recovery from ME/CFS?
  • How did Katie deal with the conflicting information about ME/CFS?  Who did she listen to?

To me, Katie is a shining light of hope where there is often only darkness.  Her willingness to share her personal experience to give hope to others with ME/CFS is to be respected and commended.  Whilst everyone in life comes from a different view point, in my experience those that recover all tell a similar story when it comes to ME/CFS and Fibromyalgia.  If Katie’s voices resonates with you, please follow her on her wonderful blog here :

http://conqueringfearspiritually.com

Katie Manning Interview April 2013 FACEBOOK

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July 4, 2013

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77 Comments on "Katie shares how she stopped MECFS relapses to make full recovery from MECFS"

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Joyce
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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.

Dan
Guest
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… Read more »
Virginia
Guest

agree tottaly

Virginia
Guest

meant totally to Joyce

Andy Stuart
Guest
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… Read more »
Dan
Guest
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”… Read more »
Sherry
Guest
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… Read more »
Dan
Guest

Thanks Sherry – glad it resonated with you and well done or your excellent progress – the credit is all yours!

Katie - Conquering Fear Spiritually (CFS)
Guest
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… Read more »
Dan
Guest

Thanks again Katie – I am getting messages from many people saying how much these interviews mean to them – you are a star! 🙂

Natalie
Guest
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… Read more »
Dan
Guest
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… Read more »
Natalie
Guest
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… Read more »
Dan
Guest
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… Read more »
Natalie
Guest
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… Read more »
Dan
Guest
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… Read more »
Natalie
Guest

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.

Steven Blake mba
Guest
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 http://www.meandfm.com). 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… Read more »
Dan
Guest

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

Pajama Daze
Guest
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… Read more »
Dan
Guest
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… Read more »
sophie
Guest

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.

Dan
Guest

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

FIONA MALKIN
Guest
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… Read more »
Dan
Guest

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! 🙂

Lucy
Guest
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… Read more »
Dan
Guest
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… Read more »
Sue
Guest

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!

Dan
Guest
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… Read more »
sue
Guest

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

Dan
Guest

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!

🙂

Mike
Guest
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… Read more »
Dan
Guest

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! 🙂

Sana
Guest
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… Read more »
Dan
Guest
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… Read more »
Stefanie
Guest
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,… Read more »
Stefanie
Guest

I am sorry I meant to say *** indirectly from my cancer…

Dan
Guest

Thanks for your comments!

jessieheels
Guest

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.

Dan
Guest

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/

Rona B
Guest

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.

Dan
Guest

Thanks for your comment! 🙂

Katie - Conquering Fear Spiritually (CFS)
Guest

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

Sarah
Guest
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,… Read more »
Dan
Guest
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… Read more »
Diarmaid Twomey
Guest
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… Read more »
Dan
Guest

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!

Katie - Conquering Fear Spiritually (CFS)
Guest

Diarmaid,
Wishing you all the best for the future. So great to hear you’re taking positive steps forwards!

Katie xx

Kathy
Guest
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… Read more »
Dan
Guest

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

Eric
Guest
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… Read more »
Dan
Guest
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… Read more »
Phoebe Thomasson
Guest
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… Read more »
Dan
Guest

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

🙂

Sue
Guest
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… Read more »
Dan
Guest

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

Patricia Simon
Guest
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… Read more »
Dan
Guest
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… Read more »
Patricia Simon
Guest
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… Read more »
Dan
Guest
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… Read more »
Patricia Simon
Guest
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… Read more »
Dan
Guest

Thanks for your comments Patricia.

Wholeheartedly agree that diet is probably the most important thing about health living!

🙂

Lisa
Guest

I would love to have listened to the whole thing but it was just way too long.

Dan
Guest

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!

Jeannie
Guest
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… Read more »
Dan
Guest
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.… Read more »
Stu w
Guest

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………….

Dan
Guest
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… Read more »
jeff
Guest
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… Read more »
Dan
Guest

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.

Ella Hackshall
Guest

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.

Julia Millen
Guest
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 –… Read more »
Ella Hackshall
Guest

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.

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