I have a dear person in my life that had covid-19 in the spring. She was trying to push through with a demanding job. I advised her to please take care of herself and rest rest rest. She finally had to leave the job because it was too demanding and took time off (which she was fortunately able to do). She's now in a much better place and thanked me for my advice and support in taking care of herself. So much gas lighting around pushing through when our bodies are telling us no. I continually went through this myself throughout my life because others were concerned that I wasn't "doing enough". So of course I would re-engage in a demanding job and try to meet social expectations that I should not have been concerned about. A lesson hard learned. I intuitively knew what I needed but fell to peer pressure all the time. I finally started understanding more about what was happening through connecting with others on the internet. Your videos have been such a Godsend. I rewatch and get something new all of the time. I can't thank you enough 🥰
I fell ill in 1982. Bedbound 3 years, housebound 95% of the time since then. And still no one will acknowledge that i am not well. "I wish I felt as great as you say I look".
yet more fantastic information, your site and video blog is such a wonderful resource! Thanks Giles :) Good news, I am doing very well these days, working again and leading a 'normal' life, but thank you so much as your posts kept me going through some tough tough times! I help patients here in Singapore who are newly diagnosed, or new to Singapore and have ME, and it is so great to be able to recommend your site, you are reaching out to so many. THANK YOU xx
Thank you, Giles, for your videos. I agree with this video. I do agree that therapy can help you deal with the fallout from the illness so long as the therapist understands that ME/CFS is not a mental disorder! A lot of doctors around here scoff at CFS still, but I've found ways to work around that by just getting symptoms dealt with. I have found only a couple friends who can be flexible enough to let me be sociable when and if I can, and to cancel last minute if I must. That takes a very understanding person. Also, I've come to believe that CFS people tend to have one particular characteristic: we don't know when to quit! I still have a great deal of trouble figuring out what I can and cannot do and how much energy to expend on any particular endeavor. Just don't know when to quit or even start. :)
@imawakebutsleeping Your rant is fully justified, sadly. Yes, it's terrible that so many of us have had to learn the hard way, that ME can be one of the most serious illnesses there is, and that rest is absolutely critical. I do sense that the tide is just starting to turn, for understanding and support - very slowly. I hope your eyes are soon feeling less painful and sensitive - not being able to do anything is bad enough, without not being able to look at things or see.
@finette4444 Thank you - it's shocking that many doctors are still told to recommend Graded Exercise for people with ME, when it is more likely to make them worse... and CBT which is no treatment for a neurological illness!
@smay727 Thank you Nathalie! There are so so many people who wish we'd known NOT to push it when we were first ill (which is why GET and CBT can be so bad). It's taken me many, many years, & I've still got some way to go - I have had pretty complex health problems with my ME (not as complex as some people) and quite severe (not as severe as some), but I'm getting closer to finding what helps me & hopefully others too! Hopefully medical research might start to help soon!!!
Brilliant! I only wish I had had this to listen to at the start of my M.E.! It is still very useful to me now too - a few years in. Thanks for another great video. :-)
@hi771lrt Thank you :) Until we know the cause(s) and possible "cure(s)" for ME, then, rest is the most important thing we can do to help ourselves get well (as it is important with many illnesses). Even after then, it may still prove to be a fundamental basis for getting well! And living here in Felixstowe, it isn't difficult to find some lovely scenery! (Glad I filmed it yesterday though, not in today's horrible weather!!)
Healthy New Year Giles!! You're videos are the best! Thanks to you and No Poster Girl there is hope for the newly diagnosed! Nathalie P.S. I would love to know how long it took for you to get where you are at. You seem to be managing ok and it's wonderful to see!
1.Rest, is *such* good advice Giles.so true. I learmed the hard way like most of us. I hope one day this advice will be in Dr.s clinics replacing Graded Excercise Therapy. GBT would have made me sooooooo much worse in the beggining had it been recommended to me. Fortunately it did not exist yet for M.E....
Thank you Mysty, I really appreciate that - so glad it feels worthwhile, the little bit of info and encouragement I'm putting out here! :) All the best to you :)
I've been pshing myself for 40 yrs, not realizing that I have ME. After ruling out many things and not even one dr mentioning it I have diagnosed myself.
Recently diagnosed and have found your videos very helpful. I understand that rest is important as you suggest, but one of my problems is that I don't get refreshing sleep and mostly wake up feeling exhausted. Wondering if you have any advice on how to reverse unrefreshing sleep which I'm sure would be beneficial to recovery? Thank you.
Hi Giles, I found this really helpful, thank you! I want to ask one thing... The consultant who diagnosed me was very helpful. He said there's a therapy program I can follow where I'd have to attend the hospital. It's cognitive behavioural therapy which I noticed you didn't agree with... I wasn't sure it would do me much good before I saw your video. Would you recommend against this then? I also have a good GP who is understanding although she admits she doesn't know much about ME.
I'm not going to say it helps or that it's healthy, but my sister says she has more energy and less crashes. not that she has chronic fatigue. have you started this diet or still interested in it?
I have a dear person in my life that had covid-19 in the spring. She was trying to push through with a demanding job. I advised her to please take care of herself and rest rest rest. She finally had to leave the job because it was too demanding and took time off (which she was fortunately able to do). She's now in a much better place and thanked me for my advice and support in taking care of herself. So much gas lighting around pushing through when our bodies are telling us no. I continually went through this myself throughout my life because others were concerned that I wasn't "doing enough". So of course I would re-engage in a demanding job and try to meet social expectations that I should not have been concerned about. A lesson hard learned. I intuitively knew what I needed but fell to peer pressure all the time. I finally started understanding more about what was happening through connecting with others on the internet. Your videos have been such a Godsend. I rewatch and get something new all of the time. I can't thank you enough 🥰
I fell ill in 1982. Bedbound 3 years, housebound 95% of the time since then. And still no one will acknowledge that i am not well. "I wish I felt as great as you say I look".
yet more fantastic information, your site and video blog is such a wonderful resource! Thanks Giles :) Good news, I am doing very well these days, working again and leading a 'normal' life, but thank you so much as your posts kept me going through some tough tough times! I help patients here in Singapore who are newly diagnosed, or new to Singapore and have ME, and it is so great to be able to recommend your site, you are reaching out to so many. THANK YOU xx
Thank you, Giles, for your videos. I agree with this video. I do agree that therapy can help you deal with the fallout from the illness so long as the therapist understands that ME/CFS is not a mental disorder! A lot of doctors around here scoff at CFS still, but I've found ways to work around that by just getting symptoms dealt with. I have found only a couple friends who can be flexible enough to let me be sociable when and if I can, and to cancel last minute if I must. That takes a very understanding person. Also, I've come to believe that CFS people tend to have one particular characteristic: we don't know when to quit! I still have a great deal of trouble figuring out what I can and cannot do and how much energy to expend on any particular endeavor. Just don't know when to quit or even start. :)
@imawakebutsleeping Your rant is fully justified, sadly. Yes, it's terrible that so many of us have had to learn the hard way, that ME can be one of the most serious illnesses there is, and that rest is absolutely critical. I do sense that the tide is just starting to turn, for understanding and support - very slowly. I hope your eyes are soon feeling less painful and sensitive - not being able to do anything is bad enough, without not being able to look at things or see.
Hi Giles.
I just wanted to say that here in Germany the situation for cfs me patients is horrible.
Here it is seen as am psychosomatic disorder.
Ditto Canada 😟
P.S. I really appreciate (as a veiwer) the effort you go to to make your videos not only informative, but *scenic*. :-)
@finette4444 Thank you - it's shocking that many doctors are still told to recommend Graded Exercise for people with ME, when it is more likely to make them worse... and CBT which is no treatment for a neurological illness!
@4000Ruby Thank you! I hope it helps others to stop pushing when they need to rest and ending up making themselves more ill.
@smay727 Thank you Nathalie! There are so so many people who wish we'd known NOT to push it when we were first ill (which is why GET and CBT can be so bad). It's taken me many, many years, & I've still got some way to go - I have had pretty complex health problems with my ME (not as complex as some people) and quite severe (not as severe as some), but I'm getting closer to finding what helps me & hopefully others too! Hopefully medical research might start to help soon!!!
Brilliant! I only wish I had had this to listen to at the start of my M.E.! It is still very useful to me now too - a few years in. Thanks for another great video. :-)
@hi771lrt Thank you :) Until we know the cause(s) and possible "cure(s)" for ME, then, rest is the most important thing we can do to help ourselves get well (as it is important with many illnesses). Even after then, it may still prove to be a fundamental basis for getting well! And living here in Felixstowe, it isn't difficult to find some lovely scenery! (Glad I filmed it yesterday though, not in today's horrible weather!!)
@JacquiSiobhanAston Thank you so much, that means so much! I am glad you are so much better now as well! All best wishes to you :) x
Healthy New Year Giles!! You're videos are the best! Thanks to you and No Poster Girl there is hope for the newly diagnosed! Nathalie P.S. I would love to know how long it took for you to get where you are at. You seem to be managing ok and it's wonderful to see!
1.Rest, is *such* good advice Giles.so true.
I learmed the hard way like most of us. I hope one day this advice will be in Dr.s clinics replacing Graded Excercise Therapy. GBT would have made me sooooooo much worse in the beggining had it been recommended to me. Fortunately it did not exist yet for M.E....
Thanks for another great video and some very important advice
Thank you Mysty, I really appreciate that - so glad it feels worthwhile, the little bit of info and encouragement I'm putting out here! :) All the best to you :)
I've been pshing myself for 40 yrs, not realizing that I have ME. After ruling out many things and not even one dr mentioning it I have diagnosed myself.
Thank you!
excellent video,thank you
Thank you very much
another helpful video! thanx!
Recently diagnosed and have found your videos very helpful. I understand that rest is important as you suggest, but one of my problems is that I don't get refreshing sleep and mostly wake up feeling exhausted. Wondering if you have any advice on how to reverse unrefreshing sleep which I'm sure would be beneficial to recovery? Thank you.
Anna Boyle You need to watch other people, certainly not this channel.. Faith Canter, health recovery, cfs health, optimum health clinic, sarah myhill
michael forture, what is wrong with this channel?
Hi Giles, I found this really helpful, thank you!
I want to ask one thing... The consultant who diagnosed me was very helpful. He said there's a therapy program I can follow where I'd have to attend the hospital. It's cognitive behavioural therapy which I noticed you didn't agree with... I wasn't sure it would do me much good before I saw your video. Would you recommend against this then?
I also have a good GP who is understanding although she admits she doesn't know much about ME.
@mariemicheles Thank you!
what do you make of the ketogenic diet for cfs? fad or possibly useful?
I'm not going to say it helps or that it's healthy, but my sister says she has more energy and less crashes. not that she has chronic fatigue. have you started this diet or still interested in it?