A symptom list: Myalgic Encephalomyelitis

[cloudbustingstar]

Thanks for getting back ,name Metronidazole to treat infection.after 3 days on this drug l ended up in hospital.and no one could find out what was up with me. 2years later it was said. i have m.e l will look for book...if i keep off all drugs. artifical colours

flavovrs and caffene .and drinks and i love a glass wine. I can get thougth the days

[cloudbustingstar]

This was so ture, l have had this suffering disease for 6 years. and it s the first time someone has list all the symptoms. l was very ill after takeing pill, my doc give me .

just like to say thanks

[AHummingbirdsGuide]

@cloudbustingstar Thanks yourself, for writing:) What pill did your Dr give you that made you ill? I'd also highly recommend you read everything you can by Dr Hyde...you will cry, probably (as I did) to read such accurate accounts of M.E. It really helps, to have good info!

[mahmoods]

After suffering for 7 yrs plus,I was only diagnosed 2 yrs ago.My condition continues to deterioate.Now with the goverment shake up and medical assesements by ATOS for the DWP,they are trying to say I am fit to work.Why dont they do the research about this ghastly condition.Its a life changing condition with no treatment for it.I am no where near the same person as I was 8 yrs ago.I would love to be normal and go back to work,I just cant.I dont feel I can go on and dont have the energy to fight.

[AHummingbirdsGuide]

@mahmoods Me too, I would love to work and pay tax and be able to do all those normal things. If we could, we would! I'm so sorry you feel so desperate...there are no easy solutions, but talking to others in the same (hideous, leaking) boat can really help. Do you have any support? If not, please consider joining one of the HFME groups...things can improve, there is still real hope esp. as you have not been ill so long as some... Hang in there...

[ralphinio4]

I'm not sure if I have this or not. I am able to exercise, often intensely. Would this be impossible if I had Me? My symptoms seem to be detachment, difficulty focusing and fatigue. If anyone has any advice, I'd be very grateful!

[AHummingbirdsGuide]

@ralphinio4 Yes, if you had M.E. you wouldn't be able to exercise intensely and you would describe the disease and main symptoms very differently. So it is absolutely NOT M.E. I am no doctor, but that much is clear, as to what you do have I couldn't possibly say, as it could be more than a hundred different things. Wish you all the best in finding a good Dr that is a skilled diagnostician....and soon!

[FallaciesDetective]

very interesting! what do you think makes the viruses cause the disease in some people? I guess genetic and stress factors are possible- or something we just don´t think of yet. I am sure it is not a psychological reason, even though a stressed soul does not make things easier.

[icaleod]

Great vid! I really appreciate the thoroughness of this video.

[redshift919]

Thank you for this wonderful video! I suffer from Fibro, CFIDS, and possibly M/E. I finally had several sleep studies, and discovered that I have Central Sleep Apnea and Disordered Sleep -- basically I have sleep deprived for over 3 years! This of course affects my memory and mood.

Please get these studies as there are some wonderful opportunities for repairing your sleep. It saved me from a slow death.

God Bless.

[FreeBritain1]

Wow, this is truly amazing. So very well done to you. Spot on!

Many, many thanks and God bless X

(See my page re the campaign to protect the disabled and chronically ill. Very important for all! Please sign the petition, via the link supplied.)

[charmedjoey]

listen. They tell me I don't know my limits because I haven't tried. After living with an illness for years, you pretty much know your own limits, right? Plus, I have trouble standing in a que in a shop - never mind standing at a check-out for hours being a cashier (or a job like this).

However, I know I'm very, very lucky to be where I am, and to have improved to get to this point, instead of being housebound like I was some years ago and like many M.E. sufferers are.

Thanks for the video.

[AHummingbirdsGuide]

Best of luck with your parents! I agree, you learn every day what you limits are with this disease, you know them inside out, absolutely.

I'm sure you know standing more tahn you should, when it's ME, can be far far more serious than mere dizziness and so on...if you do it too much, can severely disable or even kill...sigh. I hope so much you can get a job within your limits!

[FreeBritain1]

@charmedjoey I find I need to push forward sometimes and this can be very painful. Then I need to pull back to a comfortable place and stay there for a year or two. Lots of love to you in your courage. Anne

[charmedjoey]

and I seem to have a lot of problems with memory loss, as well as understanding work which I know I should be able to understand, talking normally (as in getting my words out and making sense verbally of what's in my head), and concentration.

Physically, I'm currently very worried about the fatigue and dizziness I still experience when on my feet, especially when stood still, because my parents are really getting at me to find a job. I know I need one involving sitting down, but they won't

[heiwalove]

this video is well-done. again, i recognize everything you speak of here, know it well as my own experience; and i was on the very severe end of illness, both neurological and physical.

i hope you find reprieve.

[Timebandit720]

Only thing I've found so far that helps is NADH, from most health food shops. It costs about £20 for a months supply, but it does help give you a bit more energy. I'd say it gives an inprovement of about 10%.

[theredmoon1]

Hello and thank you. I have all of the myriad symptoms listed. A great struggle to get anyone to understand this illness in the U.K. 'Establishment' Medical Profession. I have a little boy who needs his mummy. Motherhood wasn't meant to be like this was it? I'm brokenhearted. Please listen. Thanks for the film x

[deadline27]

im currently suffering from something like this...it's hard to get my doctor to do the right tests though, and it's getting more worse by the day. i wish i could find some help, my family is deteriorating because i am so sick...

[Lippinksi2]

Well done!

[xsharkywx]

THANKYOU!

[Lippinksi2]

Yes, indeed. Well done!

[Lippinksi2]

Yes, quite. Well done!

[meshatters]

What an excellent audio video.

Is there a transcript of its content available?

[fastskyr34]

It's a national disgrace that sufferers of this awful condition are not given the credence they deserve. Why does the Government sweep this illness under the carpet? Is it because they do not want to commit to the necessary funding for research into the possible treatments of this debilitating illness?

[AHummingbirdsGuide]

Yes, it is 100% about saving or making MONEY!

[GizmoLovesTheMinor]

Symptoms my 18 yr old suffers,worse since aged 11,started secondary school,result..bedridden.

Poor health poss since vaccines aged 2/3yrs .

She sufferred many pains/collapses/ undiagnosed symptoms ,some resulting in hospitalisation during first 10 years.

Any parent please..read this,be alert!!

Anyone with doubts about M.E must listen /watch this,its true,the medical proffession MUST believe and take on board.

Anyone out there worried or in the medical proffession PLEASE read this item.

[GizmoLovesTheMinor]

What a fantastic report on the symptoms and effects of M.E..there is nothing else i can add except..believe this reprt ..its true..its fact and its how my dear daughter has been affected since age 10 and possibly from age 2/3 after vaccinations.!!

[BretagneShrew]

I have showed this to a few people to help them understand. it is great to have a video that explains it in detail while being easy to understand. good on you :)

[crazyheidigirl]

i have this myselves. horrible.

[wendelaurel68]

Well spoken as each of struggle wih this illness, This link should be in a lot of forums, As you have helped explin what we cant, I do not understand the viral part of it. I dont understand any of it for that matter, Just glad that there is good knowledge avaible. Thankyou,

[ptharcourt]

Thank you for all your videos. I went to the MEResearch conference in Cambridge last weekend and it was so heartening to see the biomedical research going on into ME.

You have not been around on YouTube for a while. I hope you are doing OK. Take care and thank you for using some of your precious energy to share your knowledge.

[Bluebottle83]

Thank you so much for this wonderful video. I so wish the medical profession could be trained using it.

[gracesnotes3]

Impossible for people to understand the impact that this illness has on your daily life. No one really wants to hear about your reality...SO you just don't tell them. It's very isolating..and you have to accept that as the life that you will live. Much like a shitty little prison imposed on you..Which makes it really creepy when people accuse you of being paranoid. I have M.E.

[Bilbo107]

I wish I could remember half of this useful information, it is just so helpful to hear so many symptoms and have someone write them down for me to pass on to my specialist. I have a brain like fog these days and can never remember. Thank you so much.

[ikklehen]

Trying to explain M.E. to my family and friends, apartfrom the ones who also suffer from this is difficult and cannot be summed up in a few words. This is so cool... when I'm too over it to explain I will just give them this link! xxx!

[poppiana]

This has given me so much Jodi I can't thank you enough for the effort you have made.

My heart goes out to you

xx

[quibonum]

BEAUTIFUL!

The NASTY truth about ME presented in a clear, easy to comprehend manner.

+10

[theonlyfluffyone]

well done, all doc's should see this, and take notice x

[deadgirldreaming]

Thank you!

That describes it so perfectly.

Not fatigue...

Thank you for your creativity and I can hear you struggling doing this.

Love and strength to you Jodi.

xxx

[mesufferer]

Wonderful, thank you.

[simonwesselyfanclub]

brilliant jodi, just brilliant

[kaazoom]

Thanks once again for your excellent videos. It is so important that people understand what ME is and that it has nothing to so with Chronic Fatigue, or being tired all of the time.