Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) | NHS

Dr Charles Shepherd, medical adviser to the ME Association, and who has ME, describes the symptoms, diagnosis and treatments for Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).

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NHS YouTube team

[crocodiletheatreschools]

To put it very simply, CFS/ME feels like someone’s taken your batteries out. (For me at least .)

[ShadowMan]

I've had CFS/ME since 1993 and I have lost almost everything, my job, my sporting career and my dignity. I am just so stuffed all of the time, waking up feeling shockingly tired. It started after about 6 bouts of bronchitis and then a terrible flu and then all hell broke loose (M.E sufferers will know all of the weird symptoms I mean). After two years these calmed down and now I'm left worn out for about 18 hours of the day and suffer sore muscles and exhaustion after exercise. Life often feels not worth living

[thegamingsisters]

Hello everyone I have been diagnosed with CFS after 7 months of tests, appointments and hospital stays it does not just take a 'double trip to your GP' and after that is a long waiting list for any treatment which has not even been explained to me yet it took 6 months to even be seen by the specialist

[faeridream]

Amen shedevil... There is nothing more offensive than when someone's like "I must have CFS too cause I needed to take a nap yesterday!" GRRR

[BedboundME]

The numbers of adults who recover with M.E (not CFS) is often said to be 6%. Its interesting and unfortunate that recovery is emphasised in the whole approach to "CFS" & the severe are always referred to as a minority and then unusually never referred to again. The 25% have no treatment, abysmal quality of life which goes far beyond having to reduce hours at work etc yet have been left to in effect sink or swim is some might improve, some stay bad, some get worse & the most dock might die. Bravo NHS for being obscenely negligent in your care provision for severe M.E where most will have no access to any expert care.

[DemonKitty_]

I feel exhausted all the time along with joint pains. It's a pain in the butt... literally. I can't walk long distances without being in pain with my legs and hips which then causes me to feel exhausted and crave sleep

[anngarton]

To Dr Shepherd thank you for all the information my daughter suffers from POTS syndrome with CFS, as POTS is almost very alike could you do a Tilt Test on ME/CFS patients to see just what reaction they would have as my daughters heart rate went to 179 beats and a very low BP was recorded so she fainted. If she was put on Procorlain 5mg and medodine straight away she would be able to walk but there was a delay of one year so she is now in a wheelchair. I think ME/CFC should have a TiltT Test too.

[reds]

I have lifelong Narcolepsy with Cataplexy (NT1) 5 years ago I was struck down with CFS after insect bites, 3 years bed bound. found out 2 years ago I have Lyme after been laughed at by many Drs @ 3 Top London hospitals for asking if I could have Lyme. I was right they was wrong. I missed my childs childhood all because the NHS Drs know nothing about Lyme or think its cured with 3 weeks doxy 🙄 CFS has robbed me of so much. I pray I can get back to NT1 level of worn out & if I do I will totally respect it, because CFS is 10 times worse than my NT1 😢😢😢

[TheChocolateCheese]

At 15 in the middle of my GCSE's. It's a hard illness to cope with. I've had CFS for over 7 years now after get pneumonia in both my lungs and being in rehab in hospital for half a year when I was only 7. I have had CFS since and the hardest thing of all is people ignoring me at school. Because I haven't been I they think I am being mean or horrible and ignoring them which I'm not! I have tried B12's therapy, a strict programme and change in diet and nothing is working. Now I am failing my GCSE

[Gashb]

Please be careful when listening to people like Dr Charles Shepherd. I'm sure he does have great experience of M.E/CFS, but easy to lose hope completely listening to such negative people. I attended his talks years ago and left feeling totally helpless (his book -Living With M.E.??? who wants to live with M.E?? How about recovery from M.E?). This IS a recoverable condition, whatever age, length of illness, severity.. I have and continue to see many people with this condition recover completely!

[willmartin]

I feel so useless my life is so unproductive now

[dubstepfeind]

im sorry but i have cfs and i am not severley effected but it has completely affected my live! i understand its frustrating to but jjust because they are not as ill as you does not mean they are not very unwell and affected. i have all the sympothy in the world for you having it that severe but cfs has many different severitys!

[synapse]

@1marknz Serotonin syndrome? Do you have muscle twitches and spasms all over? Pressure caused "numbishness" (numbness localized to the area of pressure) and increasing pain? (from micro-circulatory dysfunction.) These symptoms are more characteristic of viral cardiomyopathic ME/CFS and if you don't have them, it might point another direction such as above. Which med was it?

[MyFriendPeter]

Still no treatment, still no help. #millionsmissing

[markmooch]

What are the infections that could seemingly lead to ME? Is it possible that the infection is contagious?

[dubstepfeind]

im sorry but i have cfs and i am not severley effected but it has completely affected my live! i understand its frustrating to but jjust because they are not as ill as you does not mean they are not very unwell and affected. i have all the sympothy in the world for you having it that severe but cfs has many different severitys!