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YouTube - M.E. / Chronic Fatigue Syndrome - Sleepydust Video


Health & Wellness  (tags: Myalgic Encephalomyelitis, chronic fatigue syndrome, post viral fatige syndrome, men, ME/CFS, illness, humans, children, women )

Cheryl
- 3728 days ago - youtube.com
The video aims to help the friends and family of ME/CFS (including Myalgic Encephalomyelitis (M.E.), Chronic Fatigue Syndrome (CFS), and Post Viral Fatigue Syndrome) sufferers understand the illness and what their loved ones are going through



   

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Comments

Cheryl B (373)
Thursday April 9, 2009, 12:06 pm
The video aims to help the friends and family of ME/CFS (including Myalgic Encephalomyelitis (M.E.), Chronic Fatigue Syndrome (CFS), and Post Viral Fatigue Syndrome) sufferers understand the illness and what their loved ones are going through. To view a clearer, larger version of the video, visit: http://www.sleepydust.net/me-cfs-chro...
 

Laura H (950)
Thursday April 9, 2009, 1:38 pm
THANK YOU Cheryl!!
This video made me CRY...I have had CFIDS since April 1992 and it is NOT easy. I have every symptom listed in the video plus other ones too. People do NOT understand because I usually do not LOOK or even ACT sick...I have had it for so long I have learned to live with the pain and do the best I can...after all, things COULD be worse and I am grateful for all I do have!!!
 

Cheryl B (373)
Thursday April 9, 2009, 1:54 pm
1991 here, i badly affected, worsened over the years, then the brain body damage, I didn;t think i would live with the ME/CFS/FM mine so severe, then the rest, I still here, some days don't knpw how. someone keep asking me LIKE HAVING THE FLU all the time, that PART OF IT, neurlogical, pain, IBS, the list is so long, i want to make my own video. this is one of my fav's I used to have it on my profile and put it on my firnes profiles here so they would understand ABIT, with rest on top of, and movement disorders now. anxiety, muscle weaknewss, low blood volume, post exerction fatigue, the list so very long, sensitivity to light, sound, touch........

there are 7 subgroups /geno types as well, I am #7 the worst.

if any one can forward this to ur friends list would appreciate, ME/CFS needs more exposure so people understand more

I posted another, LETTER TO NORMALS, look for it.

I may post some more of these in the near future.
 

Elainna Crowell (174)
Friday April 10, 2009, 2:09 am
This was one of the very best explanations of the condition I have ever seen. Thank you Cheryl and I hope you get better soon!
 

Mary P (177)
Friday April 10, 2009, 7:40 pm
THANK YOU ever so much Cheryl for posting this video. When I first clicked onto it, a message said video no longer available but re -checked now and am glad I did. It describes what we are living with extremely well.

Laura, I agree, that is one of the deceiving aspects in that when we look okay it can often be when we feel at our worst though it changes day to day or even hour to hour. My younger son believes that we think ourselves into being sick and that can be frustrating when going through a bad session though he is very helpful as is my daughter. I began using an alternative therapy which certainly made a huge difference to my life. It still is a challenge to live with it.
 

Cheryl B (373)
Saturday April 11, 2009, 10:34 am
Like all illnesses, the severity of M.E. varies from patient to patient. Dr. Paul Cheney stated he had evaluated over 2,500 ME/CFS cases and it can be a nightmare of increasing disability with both physical and cognitive components. Severe cases can have both an MS-like and AIDS-like clinical appearance. Dr. Dan Peterson, found that, “ME/CFS patients experienced greater functional severity than the studied patients with heart disease, virtually all types of cancer and all other chronic illnesses”. 20 years after the epidemic, Dr. Peterson said he has never had a patient that recovered from ME/CFS. An unrelated study compared the quality of life of people with various illnesses, including patients undergoing chemotherapy, haemodialysis, as well as those with HIV (until the late terminal stage), liver transplants, coronary artery disease, and other ailments, and again found ME/CFS patients had the lowest quality of life. Dr. Leonard Jason stated in a radio interview that ME/CFS “is actually more debilitating than just about any other medical problem in the world

http://www.mefmaction.net/Caregivers/tabid/84/Default.aspx
 

Cheryl B (373)
Saturday April 11, 2009, 10:41 am
there is no 'getting better' as in totally healed for me, improvements I hope and trying on my own. mine has always been very server my ME/CFS and FM, I also have HepC, and from doctors ignoring my ME/CFS i ended up repeatedly brain and body damaged, every muscle and ligament in my body is hortened and stiff,, movement disorders, not on my medical records. Left like this purposely to cover for such extreme damage, even the mister of health, oh canada

I am still at it to get the honestnuerlogival care I need, we have been for several years as people know here, not to what extent and extremes we have though.

Many are permanently damaged from medications given, some by force in teh UK and states, for a neurlogical illness, and they cover for it often, not help. Also another note for those with ME/CFS that there is a sub-group that are dose intolerant especially to anti-depressants as well as other drugs. So be careful, they and a few other med's damaged me for life, repeateldy and it is progressing.

I hope you have doctors that deal with ME/CFS/FM, or one that will learn, I have tried to teach so many since 1991, most find that an insult. Interview your doctors, don't have them interview you. it is a 2 way street and YOU ARE A CLIENT BEFORE YOU ARE A PATIENT!
 

Mary P (177)
Monday April 13, 2009, 9:10 pm
Cheryle, I did/do interview my doctors. The one I have been seeing for many years I interviewed her via consultation FIRST.....asking if she would agree to see me and also accept following exactly what my specialist recommended and my own requests and she agreed to do this. We got on very well for about 7 years.... Then her own daughter developed CFS almost 3 years ago at age 14 which was very distressing for her, as her daughter slept up to 18 hours per day, but she was a doctor, yet unable to help her own daughter in any way. I did much research and emailed it to her for 2 years..to help her understand this illness which was much appreciated as our relationship was on a more intimate level and I became her confidant for her many life problems over the years.

I saw the doctor today as nurse on holidays and her daughter is now recovered according to my dr and studying extra topics to pass High school so can go on to University.
My doctor now states that she only gives me my medication because my specialist has prescribed them. She stresses her daughter takes nothing NOW, not even vitamins and is in very good health. She herself does not see the need for any medication for CFS/ME or FM as nothing helped her daughter. Yet her daughter used to take exactly what I am prescribed when she was very ill. She does say that if young when diagnosed with CFS/ME people tend to recover in time. I was very ill last year and unfortunately this year is worse so my studies are again put on hold which does upset me.
I know so many people who are housebound and suffer needlessly, moving from one doctor to another, due to this lack of understanding by the majority of doctors. I am back to seeing my specialist who understands how I feel and why and explains it perfectly which is half the battle won as far as I am concerned. I always see him if my symptoms become severe or I relapse+++. He has semi retired but was the first specialist to understand CFS/ME in Australia and patients came from interstate/overseas to consult with him. He sends a letter to the dr stating my treatment as reqired.I look on the plus side that at least I can have what I need to help my symptoms and after all I did last year, I can understand my relapse. Pacing is so important… as is understanding.
I hope you are able to improve in time Cheryle. Many thanks for the video posting.
 
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