New YouTube Group - ME/CFS My Story

[gwyn1971]

Get Vit B12 injections. This is a non toxic vitamin and is very cheap. Look into what lack of Vit B12 in the body does to a person. You may have to go private to get the injectable vit B12. Get a blood test done to check your Vit B12 levels in the body, then get yourself some injectable vit B12. Pass this info on and save lives.

[FallaciesDetective]

how can i find this group?

greetings,

Mike

[jacgallo]

Is it possible to have a variation of ME/CFS, where the fatigue comes and goes on a week-to-week basis? I've been having chronic fatigue, headaches, dizziness for the past 5 months, which was set off by an ear infection.. But, my symptoms fluctuate a lot, i.e. one week i'll have virtually constant atigue/malaise, but very mild headache/dizziness. The following week, my fatigue will be virtually gone, but my headaches/dizziness increase at the same time.

[george05032010]

@jacgallo classic anxiety get treatment, antidepressants anti anxiety meds

[antares4141]

Mold and CFS symptoms are directly related to each other. You can prove this to yourself by going to walmart buying a $37 dome shaped 9x7 tent,(no stakes needed, nylon very low on VOC'S) setting it up in your bedroom and putting a medium to large size hepa filter in it. Don't come out without a respirator designed for asbestos and mold abatement EVER,For about a week anyways. I know I am not the only one with this condition. PLEASE TRY IT AND CONFIRM IT FOR YOURSELF WHAT YOU ARE UP AGAINST!

[shapeshifterX]

YOU ARE A KIND HEART TO PUT THIS ON YOU TUBE I HAVE A STORY AND HAVE HAD THIS FOR OVER 13 YEARS,WOULD LIKE TO KNOW HOW THEY FIGURED OUT WHAT WAS WRONG AFTER ALL THE TEST THAT WE HAVE HAD MY HAVE COME BACK NORMAL TOO PLEASE CONTACT ME THANK YOU VERY MUCH FOR SHARING YOUR STORY!!! Suzanna

[WrightNightmare]

Sorry... he also has startle myoclonus. Stress adds to his condition greatly. All stimulous does..sounds, emotions, movement, etc.... you can see him under stiff-person syndrome

[WrightNightmare]

Hi, Have you ever had a sleep test done? My husband has myoclonus with stiff-person syndrome and it has caused him to have central sleep apnea, petuitary failure, diabetes, myoclonus plus more. His is caused from the autoimune system attacking his neurotransmitters. I wish you the best in your health and life. Thank you for sharing your story. You give me hope for my husband Michael.

[kaazoom]

I saw your husbands video. It must be very distressing for both of you. I haven't had a sleep test done, it is one of the few that haven't been! I am glad that my video has given your Michael some hope, even if it is only to see that he isn't alone, although his condition looks far worse than mine! Did it start suddenly?

[WrightNightmare]

No, it is quite an insidious desease. It came on over a period of years chronically progressing. The movement disorder part did come on suddenly. The hardest part of all of what Michael has is the startle disorder (hyperekplexia). All stimuli, including sound,movement,emotions, motion around him, etc makes the head reaction jerks and body myoclonus increase. It is a brainstem problem. Zoloft and Keppra have helped the most with the startle response. I think of you often and hope you smile stl

[george05032010]

@WrightNightmare ur husband has a serious medical condition caused by excessive glutamate production, cfs on the over hand is not

[AaronShaunBrennan]

Hi Thanks for the video! I would like to start my own Youtube Group but I dont know how to do it? I was wandering if you could help me or push me in the right direction.

Thanks!

[zangdopalri]

Well done for starting this group! Let's tell

and find the truth about ME/CFS and get some

decent biomedical research and some effective

treatment to prevent such suffering from both

the illness and the misunderstanding of it by

both the medical profession and the general

public. Your courage and your compassion is

appreciated by this pwme(who doesn't have a

webcam)and I look forward to more stories.

Thankyou!

[kaazoom]

Thank you. I hope that this group will help to raise awareness of ME/CFS. I realise that some people haven't got a webcam or video camera, but there is still a way that you can contribute if they have a computer. onemedia dot com is an online service that allows you to compose really good slide shows. So if you have still photos and can write your story down, this might be a method you could use. Of course this all depends on whether you are well enough! Thats the problem with ME/CFS!