CFS GOLDEN RULES

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42 Replies to “CFS GOLDEN RULES”

  1. Toby Morrison, what do you think about these videos on U tube that advise raw eating and getting of the tablets because they're toxic for you, I am so confused as to which advice to take?

  2. I struggled with this illness and then four years into it I was hit with advanced stage three colon cancer.  My husband was great with the needed support that allowed me to function and adjust to the nightmare.  During my final week of chemotherapy, after surviving the major surgery, months before, my husband died and I found myself without any support from anyone, outside of myself.  This has been going on twelve years and the trauma of all of it, layered, created severe PTSD.  Perhaps the numbness from severe trauma may be a part of survival of this situation.  I am adapting, over time.  I had to toss out all of my lifetime of 'beliefs' in what this reality has proven untrue.  Thanks for the video — pacing is so critical.  Pain, exhaustion along with mental fog.  It all demands careful pacing and learning what works and what does not.

  3. First comment I've ever made on a youtube vid. I felt so strongly opposed to some of the advice given here, I set up an account in the hope my experience can help someone.
    I have had CFS for many years but was diagnosed around 9 months ago. I'm very much on the road to full recovery and I intend to get there. I still have bad days but they are far less often and far less severe. I do not avoid doing anything. At all. Ever.
    The main changes have been my diet, being consistent with the exercise I do, and changing the way I see life.

    Although Toby makes a good general point with regards to pacing yourself, I think the credits system he is implementing is a counter productive way to see things. Here's why….

    I am lead to believe that CFS sufferers are generally high achiever/high stress type personalities. I know both of these are true in my case. The thing that I have found in my own experience is that it is not really the physical act of doing whichever task we are confronted with, but the way in which we see it. We learn to fear things like 'payback' and 'using our credits'. If we start seeing household chores as things that are depleting us, then we have set ourselves up to loose. Let's see these things as good regular exercise to aid us on our road to recovery. Let's not fear payback. That fear will only make our situation worse by adding more stress to our day. We wake up the next day expecting our payback or our credits to run out. And sometimes they do! And it will be frustrating! But it isn't like we haven't been unable to get off the couch before is it? Learn from it, move on and don't fear life. Don't fear social situations or conversations that might make your head feel it's imploding. Don't fear hard work. Don't fear negative, draining friends who may need our help because they're not in a good place either. And for me, the hardest one to get your head round, but definitely the one most important- Don't fear death. It's going to happen. No matter how much you stress. And imagine if when it comes, you realise that you wasted your life worrying about what you couldn't do because of CFS. I know we can physically burn ourselves out, and we have to try to recognise the signs. But if we do, don't worry. Have a rest, settle your head and get right back on it. It can be done. Give payback no power over you.          

    Just my 2 shillings.

  4. Thank you Toby for the positive, make sense reminder about energy usage 🙂 I caught the first 2 Golden Rules and am assuming the other 3 are relative to the individual. Is this right? If so, I believe #3 for me is avoiding hot, humid weather/conditions as I believe it is a trigger for my CFS energy depletion as well. Does this "rule" make sense from your perspective? Perhaps I'm diverging from the energy concept. But again, Thank You and God Bless!

  5. Thank you for this video. I'm waiting to be investigated, my gp has send off for funding for a diagnosis. I don't know what it entails and would be so appreciative if anybody has gone thru the process to explain it. As I'm reading some of the comments I can't stop my tears. I can feel the same pain I feel in their words. Mine started just over 20 yrs ago but in that time I have had a few good periods that would last between 6mnths to up to 18mnths every 3 or 4 yrs. Wen I first got these I used to think it's gone. It won't come bk but after all this time I now accept it probably will come bk. It has and wen it does I'm barely active and I can sleep 18 to 20 a day for weeks n months. It's terrible but I was too unwell to tell the gp. By the time I'm ok and can tell the gp I'm already talking about it from a past tense. This time it's the first time I actually completely on my own so I went while it's on going because I need urgent help to survive. I don't know where to get this help as I haven't been fully diagnosed yet….

  6. thankyou for ur advice!! i often run outta credits
    ..i thort i was doing a good thing on my power up days !! i felt like i.HAD to do alot to make up formy credit-less days. but wat u hav said makes complete sense!! im going to try this and definatly obey the golden rules .. hav a goody fellow cfs sufferers.

  7. I think it's very important to mention the fact that these rules apply more for the mild to moderately affected & not for those whose illness is severe. 25% of cfs (me) sufferers have a severe case & are bedridden, wheelchair bound, & completely dependant on someone else for almost all of their needs. The medical community is still in the dark on this & they often give advice that could further harm (& in some cases kill) the patient so it's imperative that correct & thorough information be available. Great info for those who aren't at the end of the spectrum though. 

  8. Thanks…really like the idea to give activities a number value..helps to keep track of where you are..because for me I need a warning before I crash…I can be folding launry perfectly fine then a few mins later…bam need to rest

  9. this moron dosent know what hes talking about. hes describing the lifestyle of a normal person. take a 30 min break, only do a couple things a day rather than fill your whole day. this guy needs to shut up.

  10. Hi Toby this was one of the best videos that I have seen by you I saw it a few months back and I sent it to my siblings and my adult children and I think my older brother was the only one that said "good " except , I think one of my daughters said I shouldn't watch these programs on illnesses because it's not good for me to do that! They don't really understand and haven't for years! I've been bothered with chronic fatigue bad episodes since about 1988, but was diagnosed with thyroid problems and unknown fatigue problems since around 1993. Then a few years later with fibromyalgia and CFS. My now ex-husband couldn't deal with my issues and just tolerated me and eventually asked for a divorce so I went through a bad divorce!! Anyway I'm trying to change my inner thinking and my understanding of my religion and changing my self talk some, and it's helping some. Thank you for this video I think it is very helpful in explaining Cfs !!

  11. i find that its hard to communicate with my parents, I've had it for 5-6 years and my mom is more reciprocal when I say how I feel, my dad on the other hand is worse. They don't do it as much but no matter how bad I feel, they want me to do this or that now (generally chore wise), and when I try to describe how I feel, I try not to come across as complaining but when I say I feel tired, or worn out, or fatigued, they often rebuttal with I feel the same way. My mom has been having some health issues so I'll give her that, but the rest of my family hasn't been diagnosed with any kind of chronic health issue like chronic fatigue syndrome.

  12. I wish you had a centre in the UK. Thanks for the advice. I'm guilty for trying to push myself on good days!

  13. We, the CFS suffered, should rate these videos for who they will help. 1-3, 3 being really sick. I consider this a 1 video. So far, everything on YouTube is a 1 video. Topical, entry level, still working 9-5 but tired, info. . I'll keep looking. If you do everything that the sickest CFS sufferer does: Hard core dist, schedule, everything possible, then you did all you could/can. If you treat this lightly it can kill you and destroy your life, if you let it get worse

  14. Dear Toby,  please remember that there are different levels of ME. For instance I am on III/IV (diagnosed by specialists in ME) Gardening is absolutely impossible and most of the daily activities. 1 or 2 things per day, that is daily reality in the best days. We don't have the possibility of accumulating credits, that is part of the condition. Resting doesn't help much. It is not an lineal illness, impossible to accumulate energy, that is one of the main characteristics of ME.
    For the depression: B12 + B9 is the only thing that helps And phosphatodilserine for the menthal fog.
    Some more information that might interest you:
    In UK you have doctor Myhill http://www.doctormyhill.co.uk/ one of the world specialists in ME. She has a protocol and is followed by many, maany pacients in Spain. It is quite expensive, though. The other well known protocol is from american doctor Konynemburg I started with it recently and the menthal numbness has been decreased quite a lot as well as the depression. There is a group of pacients in Yahoo about the protocol https://groups.yahoo.com/neo/groups/CFS_Yasko/info Konynembourg and Myhill agree that everything in ME occurs within the metilation cellular process. The basic difference between Knonynembourg and Myhill is that he goes to the cause and she focuses in giving more "gasoline" to the cells.
    Check this group: http://www.investinme.org/ They are working with Spanish cientifics researching about bio tracers for ME

    Un abrazo from Spain!

  15. I thought Toby was great at explaining CFS , I suffer from FIBROMYALGIA and on many levels it's very similar to CFS symptoms, so I can also use the credits system for myself , Thank you Toby for some fantastic information, 🙂 

  16. I can't stand that all these programs and facilities are sooooo far away.
    I have persistant, "vertigo, fatigue, depression and visual disturbances.

    This is also for me and I don't want to go on disability….

  17. Thanks Tony, for training me in this condition. This is causing a divorce, my family and friends. I need to find a good specialist..Right now everyone is classifying me as a Pysche patient. I refuse to take medications

  18. I was told that women not so young anymore should take 500 mg HCL and 100 mg Pepsin supplements to help their sleep problems.

  19. hello there love the video how would you manage a 8 hour working day plus 2 hours driving to and from site
    I put fencing up so digging holes heavy lifting I can get away from?

  20. Toby, please don't shorten "Chronic Fatigue Syndrome" to "chronic fatigue" as you do in the beginning of this video. Making this shorthand name just increases the public's confusion. Chronic Fatigue Syndrome is a diagnosis such as Rheumatoid Arthritis — chronic fatigue is just a symptom such as hurting joints. Chronic Fatigue Syndrome is NOT THE SAME THING as chronic fatigue and we who have it shouldn't confuse the issue further by using a detrimental short version of the disease's name.

  21. Please asked every city hall, college to light up buildings with Blue light on May 12 ME Awareness day and send article to papers explaining ME and need for R&D

  22. hi toby. how many publications have you done for peer revewed journals,
    what is your medical or scientific training? should you really be 'caring' for patients with a serious medical illness. why do you never emphasise the importance of a drastic increase in the scale of medical research into this terrible illness? why do you constantly refer to this illness as chronic fatigue? this is even worse than chronic fatigue syndrome which in turn is a worse name than ME. you are also promoting your 'treatment' as a major solution to CFS/ME. if the best ME specialists in the world are limited in what they can do for patients at the moment, you are either a snakeoilsalesman or the biggest medical genius of our time

  23. This isn't my experience of CFS. On the one hand I do have to balance rest days and periods to achieve certain things. But the credit system in the day just doesn't connect with my experience at all. I have days when I am completely wiped out no matter what I did the day before. Days when I cannot leva e the house. This seems to come and go. I remember 20 years ago being completely wiped out for months. I am again now, in between then and now I have had times when I have outputted massive amounts.

  24. I'm at a point where I can't do any of the credit expenses you're referring to. I can barely handle tasks, shopping, I don't have enough energy for friends or any events. I mostly just lie down or sleep. I hope this gets better. I guess I need to take control and gradually get myself functioning at least a little. The most I can do is walk my dog around the block only because I have to.

  25. Strange thing: with all the back ground noises, the way of talking, that is quite stressful, this for me as a person suffering CFS for years, is quite painful. This seems to me as some kind of "performativ contradiction": the way something is done is not in line with what is said

  26. Here's how to explain it to family and friends. It's like having chronic flu. Imagine trying to lead a successful productive life while with the flu.

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