Laurel's October 2009 ME/CFS Testimony to the CFSAC

[DadsBlueAngel]

ME Is not CFS? In Great Britain people with ME get a added sum and in order to save the stipend by putting the patent in the proverbial Procrustes bed. Roger Burns was pushing CFS to aggrandize status and not considering the impact on the lives of patients.

[DadsBlueAngel]

Back later--my eyes are fuzzing out.

[DadsBlueAngel]

Actually, FM survived as a diagnosis because they were related and since the FM people were largely functioning at some level, the buyers club could raise more money by keeping the FM adults and and children grouped together grouped together.

There was also little sense in throwing away the credibility gained by Kennedy's doctor. This is where Celeste Cox came in. She worked with Kennedy's doctor's nurse until she died in her nineties. The book'll last but the patient has gotten worse.

[reddolphin65]

ME is not CFS - Check out AHummingbirdsGuide to learn the differences. They are two distinctly different illnesses that have been lumped together. I wish everything you do, for you and other suffers.

[babybunnies]

can you please mention what CDC and NIH stands for??

[ellebee4]

@babybunnies CDC = Centers for Disease Control. NIH = National Institute of Health

[CFSDemo]

i just re-watched this. this is a powerful video and laurel is an amazing wonder woman. -- rivka

[MrBlueVeins]

Thank you for sharing. I too had completed a degree and was outgoing and loved traveling. I came down with ME nine years ago after contracting malaria. I have struggled on and pushed myself due to ignorant Drs and misunderstanding family and friends - I now am able to do something one or two times a week and have to make sure I spend the rest of my time resting at home.

[Tenortone21]

Keep on fighting!! I've had CFS for 6 years now, and I am recovering. I feel stronger and I feel my mental faculties returning. Most of all, I see my health returning slowly. I also got CFS after a bout with mono (EBV), but hear me when I say this. ALL THE MEDICAL LITERATURE SAYS THAT EBV RUNS ITS COURSE. Hang on to that. It will go away. You should look into Co Enzyme A and Co Q 10. Honestly, my healing began on Coenzyme A. I got rid of the "Full Body" tension most of us have because of it.

[booboojohnson1234567]

I have some information that may be able to help you. I want to help you. Please, contact me if you are interested. I am not a spammer. I am a sufferer of a severe case of ME/CFS and am striving to get well. And I want to try help you; my heart goes out to you. Keep surviving.

[booboojohnson1234567]

I am also bedridden with ME/CFS. I have lost my job, my life, even my 7 year old daughter, who I am unable to care for anymore; I am barely able to keep myself alive; struggling to get food each day to stay alive. I am also virtually invisible. With very little understanding or compassion from family. I have been blessed with a wonderful man, who has saved my life and helped me to continue to survive. But, I don't want to only survive...I want to live.

[moomoobindi]

My case is similar to yours...got it in 1992 at age 18 after a case of mono. The mono symptoms appeared a day after an MMR booster "required" for college. That was 18 years ago. On a scale of 1-10, 1 being bedridden, 10 being normal, I am probably a 3.

[theonlyfluffyone]

Thank you : )

[sachetrose]

Many many CFS/ME patients dismiss Lyme because their tests came back negative. Please it is very important to understand that regular lab tests miss about 50% of Lyme cases. Please use labs that specilaize in Lyme, there are only a few in the US. !! It can save a life .

[sachetrose]

I hope this beautfiul young woman is fortunate enough to receive information and maybe an initial lyme lab panel test through IGENEX labs out of California for Lyme. and and Heavy Metal Urine Analysis test by DMSA challenge. Many other helpful tests but if its CFS/ME caused by Lyme those are the vital ones, after that a properly trained LLMD can treat on symptoms, as diffrerent co-infections present with different symptoms. (regular tests miss 50% of Lyme cases , must use specilaized lab)

[sachetrose]

Thank you for sharing your story. I went through almost one year of being bed ridden. I cannot imagine a decade. While I am not anywhere near 100% , I can now drive again, walk in the sun, and the little things. I really agree with all the dreams and also the previous life , suma cum laude, professional and want to return to a productive full life.

Will post what helped me ..thank you

[sachetrose]

Thank you for sharing your story. I went through almost one year of being bed ridden. I cannot imagine a decade. While I am not 100% , I can now drive again, walk in the sun, and the little things. I really agree with all the dreams and also the previous life , suma cum laude, professional and want to return to a productive full life.

Will post what helped me ..thank you

[andyroesch2902]

i know what you mean i have no life............ only headache, chronic fatigue, dizziness and muscle pains............ i cannot understand why they don´t help us........... greetings andy from germany  i have cfs since 6 years now

[missdisorientated]

Thank you for sharing your story and helping me understand this condition better. Sending best wishes to you.

[steveruston]

there is a very good book titled " Aids the crime beyond belief" by donald w Scott, and the you will understand about CFS/ME

[angelsolace]

Thank you for having the courage and determination to make this video and tell your story,a story that echoes a thousand stories, like mine. We must all keep fighting. Amy x

[hecalledmephooli]

Thank you for making this video, and taking your case to people in Washington who might be able to help. I share your diagnosis, and have been bedbound and housebound for months at a time -- a whole year between Nov. 2008 and Nov. 2009, for example, and several months again in 2010. Good luck to you, and thank you again for fighting for us.

[schokolade975]

Googling about the subject I read on wikipedia that the XMR-Virus belongs to a group of MURINE LEUKEMIA VIRUSES frequently found in mice... I got this severe bronchitis that might have led to this incredible tiredness and weakness in autumn, shortly after riding a horse indoor. Imagine the huge clouds of dust blowed up and the presence of mice... The weather was cold, I didn't wear the right clothes: Preparing the horse I was freezing, riding I was sweating and afterwards freezing again...

[schokolade975]

I don't know what to say - it's so sad... You surely tried any possible treatment - smart as you are... It's an impressing vid that will help to fight preconceptions in society.

I'm glad to hear that you aren't alone in your situation! I might have this disease in a weaker form. 10 years ago I had a severe bronchitis... Searching for the cause of the remaining tiredness and weakness I found out that the thyroid-gland was inflamed... But medication (substitution of T4) doesn't help actually..

[schokolade975]

I constantly feel little pain in the throat, my allergies got worse (pets, pollen, dust...), I got urticaria factitia and then I got strange chronical ear-infections. The ladder are spreading in the head, causing bad headaches, pink eyes...

I have a constant feeling of being ill, of having a sort of never ending flu. Having also other diseases and problems it's much more difficult to diagnose me correctly... It was a good idea to upload such a clear and obvious case like yours!!!

[littlebobbie11]

Some people have trouble converting t4 into t3 the more active form of thyroid hormone in case you haven't already looked into that... I think it was in dr brownsteins book, im not sure...its hard to keep track of where I read what...

[TheLittleMuc]

I was in your position 10 years ago. I have since recovered a bit to the point where I can enjoy a few hours uptime as long as I don't push it.

Just a note, I have a friend who has M.E. much worse than myself, he travels the world and has found that on his travels when he goes to Saudi where it is a very hot, dry heat he recovers almost fully, but when he got on the plane to Indonesia where it is a hot, sticky climate his M.E. came back with a vigour. It seems that M.E. likes damp atmosphere

[Catherine8raw]

Fats have powerful antimicrobial/ant-iviral properties. Patients come out of wheelchairs/bedridden states with fats! Not vegetable oil but olive oil OK. High butter, NO carbs but veg. It boosts immune system again. It is worth a good try. For breakfast fattiest lamb with mashed up brussel sprouts, dinner olive oil on some salad, with mushrooms, or lots of Butter with kale/mushrooms and 1 boiled egg. Another meal eggs cooked in goose fat. Low carb veggie juicing(celery/cucumber/lettuc­e).

[TheJodavidson]

Thank you so much for sharing your story and speaking for so many of us who face this condition.

[TheJodavidson]

Thank you so much for sharing your story and speaking for so many of us who face this condition.

[sunny35b2]

Hold on to your dreams , never give up..there will be a cure because we WILL be heard as long as there are more like you.. I pray you get everyone of your dreams, and God Bless for sharing your storie..^i^

[emootje1973]

You are a hero

[kenjohnsonmusic]

Sad...

[DysautonomiaMD]

You are so sweet to share your story with us.

For all people with an Invisible Disease, believe me: on the 'bad' days, it is quite visible.

Highest Personal Regards,

Dr. Margaret

[DadsBlueAngel]

Why wait? I developed severe M.E. 30 years ago. My partner had Prostate Cancer in remission when I met him. I am bed bound.

[PowerRedBull]

@DadsBlueAngel

Please keep an eye out on the recent research about XMRV. Since last octorber there is hope again for us, as XMRV is found in most CFS patients and hardly in others. A biological "cause" would be great, becuase it will lead to a solution (problem must always be found first of course). XMRV is a retrovirus like HIV that "connects" itself to your DNA, so you will problably never really get rid of it, but as you can see in HIV patients now, there are good ways to supress it

[ellebee4]

Thanks, Mike. It can be hard for me to reply to everyone's comments. I am in the U.S., but yes... my doctor worked directly with Dr. Meirleir on my case a few years ago. We did his protocol. Regretfully it did not help me, but that doesn't mean it won't help you. If you can see him, it would certainly be worth a try. Good luck!

[MimicMimix]

The medical profession has failed all ME sufferers. They need to get off their backsides and treat this illness with the same urgency as they treat cancer. So much suffering must not be allowed to continue.

[PowerRedBull]

@MimicMimix

Look up about XMRV other CMF/ME/FIBROMYLGIA (or however they lable it) patients. It is problblt the cause of XMRV as it is a retrovirus, like HIV is. There are only 3 known human retrovirussen in the world. If this is the cause of CFS/ME/FIBRO there's definately hope, as you can see all aids patients now feelling quite well. XMRV is a less complicated retrovirus than HIV, but it works a bit the same. Look up more about XMRV on internet other patients! there's hope finally!!

[Johnseventeenthree]

Beautifully done! Thank you for making this video, and sharing it. God bless us and help us all!

[FallaciesDetective]

greetings!

[freedomfromme]

Thank you very much for sharing this brave video. Please do take a look at our channel as we have many specialised ME/CFS videos

[lilbit0078]

Thank you so much for sharing your story. You said everything that we all feel and would like to also say. Thank you for speaking out and being our voice. Your video really touched my heart. Awareness is key. Love and hugs from someone with these illnesses.

[mroy99]

Laurel, what an inspiration you are to all of us and especially to me.

[kristynita]

wow, very powerful. this is very inspiring. everyone with cfs should make a video like this telling their story and have them be played at cfs meetings. strength in numbers.

[layzchips71]

NOOO it actually get's that bad Im 15 years old and have been going to school with this for the past 4 years with these symptoms and it's terrible I'm almost socialy irrelevant i still get good grades but not as good as i would like it to be I had to quit sports.... I feel like a cripple and i feel like nobody beleives me most of the time I ve been to a million doctors and they dont do anything...it's impossible for me to function normally all of this kills me inside... thank god im good looking

[ixchelkali]

Thank you for telling your story so beautifully, and in so doing, speaking for many of us. As I watched the podcast of the meeting, your statement brought me to tears. I truly wish for you that your dreams come true.

[Claironess]

I have had CFS symptoms for 45 years and became totally disabled six years ago. I too pushed myself to the point of being bedridden though I was able to take a bath by myself and walk to the toilet. However, I felt close to death (most probably heart failure) when I started the Marshall Protocol three years ago. While I still have a very long way to go, I no longer feel close to death. My improvements are steady, though slow... slower than others who were not as sick or not sick for so long.

[thatcoolfrog]

I too have lived in this hell for years. Now I am almost completely recovered. Never dreamed I could feel this good.

I have two words for you: Marshall Protocol.

[femmecorbeau]

laurel, 13 yrs after becoming ill, i so identify with so much of what you said. i've had two 1-yr stints of being practically as ill as you... i don't why i go through different stageshopefully with the understanding that the vast majority of us have a retrovirus, and a contagious one, there will be new and better, research. alevai! in'ch allah! whatever it takes... all love (what is left): profit from your love relatiohship! it is what has kept me alive all these years... xoxoxooxox ~laura t.

[Breadfriend]

Thank you, Laurel. You are not alone. I also testified at the CFSAC meeting and told my story. While our circumstances aren't exactly the same, we both told the committee to concentrate on the same things. I believe they heard us. I hope they will do what needs to be done. Keep up your courageous spirit and hold on to the blessings. Your sister,

Sarah

[justinreilly1]

Thank you!!!

[ShermanTank13]

bless you and thank you. I wish so much courage wasn't needed to defend ourselves, but thank you for having it.

[beitinjan]

Thank you for this very clear, honest and real account of life with M.E/CFS. People with this illness are not asking for 'special treatment', we are just asking for treatment. We are not asking to be put at the front of the queue, we are just asking to be part of the queue, afforded the same integrity, patience and respect as anyone else who is ill. Thank you for this very valuable contribution to spreading awareness and for sharing your strength with us. Thank you x

[gregcrowhurst]

Watching your video I feel like weeping with recognition of all you say, of all that is lost and all that is wrong about the way we are treated. We have to hope for genuine recognition of this disease and for proper tests and treatments a respect. I really hope the CDC listens and acts upon what you say. Thank you,

Linda (severe ME 15 years)

[WellnessMom]

Laurel, You are a beautiful woman and I wish you the best in your journey to good health and marriage. I have had CFS and Fibromyalgia for 9 years now. It is not as debilitating as yours, I understand your frustration w/the medical world. I found a doctor not long ago who has specialized in Fibromyalgia, CFS, Thyroid and Adrenal Fatigue for 14 years. He has some wonderful free information on his website that I'll post on my profile if anyone is interested. Stay brave and keep believing!

[georgiemine]

I will be 65 this month and I was diagnosed with CFIDS in 2001 after 2 years of exhausting tests because no one seemed to know what was wrong with me.

I still live in the "Inn" as me & some fellow PWC'S call it when you have absolutely no energy to do simple things in life.

But, I want to say, after seeing your video, I feel like one of the lucky ones for I can go outside sometimes.

I hope & pray that one day soon you will be able to marry and have a wonderfully joyful life!!!!

Thank You!!!!

[tkobitch23]

I couldn't fit this in, but I wish everyone who also suffers from this stigmatised & misunderstood illness a speedy recovery/improvement. I admire everyone who helps raise awareness for us.

The hardest part, for me, is missing out on things teenagers do: see friends, date, drink, go to formals & parties. Even studying; I used to study for 3 hours a night, I loved it. Now it's 3 hours a week.

One day people will stop calling us lazy, depressed, attention seekers and help.

Thank you!

[tkobitch23]

I hope that you improve soon. I know it sounds naive, but when I hear about fellow sufferers who have also been bedridden & improved, it gives me hope. I got EBV at age 8, was told I was lazy/depressed until 13, when I got a referral to my paediatrician who specialises in adolescents with ME/CFS. I'm now 18. No one knows what to do anymore, only Melatonin & antidepressants are used in Australia. I admire your strength. I had a newspaper article published about my condition to raise awareness.

[obscenely]

Laurel, I'm 23 and fell ill at 18. I was in exactly your state for nearly 2 years and looking at you I know exactly how you feel. I just wanted to say that, although I seem to be recovering, I will continue our fight x

[Carrigon]

Thank you so much for making this video. I was struck down by CFIDS in 91. I spent the first two years bedridden and I've now been housebound all these years. There is no quality of life with this disease. I get to watch everyone around me, even people in their 70's having a full life. And I can never do much of anything at all. You are not alone. Thank you for getting the word out.

[txbride]

Lauren, I have emailed this video to my mother who has suffered with ME/CFS all my life and I am 54 years old! She will be so proud of you for making this and sending it to the CDC. I hold you in my heart and prayers, dear one.

With love and understanding, Laura Sutherland

[RebeccaArtman]

Laruen, I've forwarded this to the CFSAC pateint Care and Quality of Life subcommittee so that we can stay focused on the needs of the patient community. Thank you for your posting and your testimony.