3. Symptoms – Get Well From (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome CFS)

As well as severe physical and mental exhaustion, people with ME suffer with a wide range of other debilitating symptoms.

You can read a transcript of what I’ve said, at

29 Replies to “3. Symptoms – Get Well From (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome CFS)”

  1. I whs that more doctors would call it M.E. instead of "chronic fatigue syndrom." Telling people that I have "chronic fatigue" makes me feel like I'm just telling people that I'm lazy and so I hide being an excuse…atleast that's how their responses make me feel. When I tell someone I have "chronic fatigue I usually hear people tell me that they "have it too" (example: they can only work out for 1 hr instead of 3, they have CFS because they work 40 hours a week, etc.) 

  2. granite, those things will cause fatigue and exhaustion but it's not chronic faituge! I'd love to be able to say that I am fatigued because I just worked out for an hour or worked full time…but I'm too exhausted to do anything at all! I respect the people that hold down full time jobs and other responsibilities and I'm sure they are tired but I hate how so many people act like CFS is no big deal. I hate when people tell me I just need to work out more or whatever. It makes me feel alone and 

  3. misunderstood. I am NOT lazy. What I wouldn't give to have enough energy to work full time, go to the gym, PLAY WITH MY KIDS, keep up with my wifey and mommy duties. I wish everyone would use the term M.E. and not CFS because it's so much more than just being tired. It's a way of life..or lack their of. I am miserable. I still have my faith in God but I'm just so confused as to what I'm supposed to do to glorify Him,when I can't even live my life! I feel like such a waste ;o( 

  4. I used to be so active. I used to teach a classroom full of teenagers about Jesus and the Word of God. (and believe me, that took a LOT of energy!!!) I used to work fulltime in a fast paced deli. I have 3 kids (plus a stepson which makes 4) and I used to feel like a good mom and a good wife. I hate that my family has to see me suffer. My hubby works full time and then comes home and has to do MY chores most of the time. I want to GLORIFY GOD! I want to spread the gospel and do ministry work 

  5. ministry work like I used to… but I cant! I know their has to be a reason why God kept me alive. I almost died 7 years ago but he spared my life..their has to be a reason for that! But why? If I have to live everyday of my life in so much pain and so tired why am I still here? God please show me what I am supposed to do! The apostle Paul lived with horrible pain (he described it as a thorn in his flesh but the bible never clarified what it was) I wonder if he had fibromyalgia!!! Paul is my 

  6. inspiration. He served the Lord with all of his heart, his mind and his strength despite the pain he was in and the persecution that he suffered. And just look at Job! Despite all of the horrific things that happened to him and the awful illnesses he had he never gave up on God! He didn't understand why God was letting him suffer BUT he never gave up..not even when his wife told him to "curse God and die!" God allowed Job to suffer in order to prove to the devil rhat despite losing everything

  7. and living in so much pain he was not going to give up! God showed satan that Job was a true child of God and that their was NOTHING that satan could do to get Job to lose his faith in the Lord. This is where my inspiration comes from. I don't understand why I have to live like this but I will NOT 'curse God and die." I'm sorry for the biblical rant and I don't mean to offend any non-believers. I just want to let everyone know (including satan himself) that I'm not giving up! 

  8. @Rhondamarie00 Yes, it is truly awful that there was a move (obviously very successful) by the authorities, over the years, to confuse some of the most serious and debilitating neurological and neuro-immune diseases in the world, with a whole range of other illnesses, some much milder and many caused by emotional stress or social factors – all sorts of "long term tiredness" – and called them ALL "chronic fatigue". I would like to think the truth about that will come out one day…

  9. @Rhondamarie00 I know it is awful when we cannot do the things we would love to do – and which we would love to think we could or should be doing! St Paul talks about our hope for future glory, as Christians, with the whole of creation groaning as if in the pains of childbirth – considering "that our present sufferings are not worth comparing with the glory that will be revealed in us" (Romans 8:18) 

  10. Thank you for this. I'm sending it to everyone I know, to explain why I'm so "odd" and high maintenance.

  11. Thank you so much for the work you have done on ME, and for making this information available via such well-formulated videos (especially when having this disease makes finding the mental/physical energy to do so all the more difficult)- It is such a relief to know that there is a name for the condition I have been dealing with for over a decade, even if there is no available cure or remedy at the moment – (…cont'd in next comment…)

  12. Ironically, it is also true that many of us are compulsive overachievers (and are/were some of the most determined/ highly active people I know)- which makes our inability to fully take life by the horns/continue to run 7 miles a day/pursue my hobbies/research/a job/full independence due to the fatigue and accompanying symptoms, as well as (and especially) the lack of understanding/compassion from the general public (and even the medical community)- all the more frustrating –
    

  13. Hey, sorry to hear you have been feeling so ill. So far, doctors have not agreed on any actual tests to be able to diagnose ME or CFS, they kind of rule it in or out, based on symptoms, and excluding any other illnesses it might be. Do try and get good support though, and don't listen to anyone who tries to tell you that it's "just in your head". Good luck!

  14. You're so right, and it's devastating. I'm a lot better than I was, though, and hope – God willing – to keep being able to feel better and do more too. All the best to you.

  15. Ive had CFS for a fair few years now but things like being cold or hot all the time and lack of appetie I have i didnt really connect to my illness. 

  16. To be honest, if you didn't have that drive in you, it might have been a lot more difficult to strive to get better, I see this in my mum and I think it's a blessing 🙂 Stay strong ! 

  17. I collapsed yesterday on a bus through my ME my care coordinator for my mental health won't meet me at my house, she says it's an enviromental health issue, she tells me to just get up and pick some stuff up and that she won't help if i'm left homeless

  18. Thank you for making all of these video's.  I relate to them all.  It is as if you have taken all my thoughts and feeling's that have been jumbled up in my head and made them all make sense. I know how hard and how much energy you would have had to use to compile all of these.  Thank you so much for speaking out and being our voice .   It brings relief knowing that people may finally understand how difficult life is for M.E suffers. x

  19. Giles I am wondering if chronic fatigue can cause internal body tremors after exertion.I tend to get seizure like vibrations if I do too much.Have you ever expierienced these or know if it is common in Chronic Fatigue.I appreciate your time.Thanks

  20. Ive suffered for 12 years before finally be listened to and diagnosed but I have not in pver a yr recovered nor have symptoms calmed. I feel real sad. Angry at the fact im not getting anywhere and im bed bound.

  21. Definitely an accurate list of symptoms. I didnt realise how bad my M.E was until you see the symptoms listed. I am unfortunate to suffer badly since February 1996. It is so debilitating it defies belief that we still get treated appallingly and still get labelled with mental disorder or issues despite M.E being a very physical real disease/illness. And no mental, psychological or psychiatric component whatsoever! Its criminal how badly we get treated by health professionals.

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