“Maybe you should go for a walk and tell yourself you’re going to get better”. Geez! What a genius - what useful bloody advice! 🤬 Thanks for raising awareness about this debilitating condition, Krista 🩵

Brown Sharon Smith Donna Garcia Carol

Sprayed pesticides and food additives etc put dangerous chemicals in your system . Molds being looked at . Allergies can zap away energy. Eating but the body unable to convert foods to energy. Lots of real reasons for ME / CFS. Technology and electronics really take energy away from some ppl . Artificial, additives , GM foods etc all affect people at various levels . Vaccines. So much to be looked into .

I hope a cure will be found for all sufferers asap. I hope you get understood more in future . You’re helping many people by sharing . I’ve had tests galore , my fatigue apparently is caused by nothing . I work still but it’s impacting my life. Sleep is my fav thing . My daughter has ME/ CFS and is on disability since she caught Epstein Barr at Uni. Was healthy and looking forward to getting on with life until this struck .

Have you had minerals , vitamins, electrolytes, bloods , heavy metals , parasites , liver , kidneys , scans , allergies tested at all?

My daughter caught CFS/ME at Uni after catching Epstein Barr Virus . Changed her from a healthy , energetic, young lady to an exhausted, struggling to do any daily tasks , lack of energy to enjoy fav activities like reading , painting, walks and swimming , horse riding . Minimising her life to getting up being an achievement. Often in bed for majority of the day . Eating varies . Her partner helps so much by cooking . Her therapy dogs is a blessing . It’s very sad .

I'm about 50%. I don't travel any longer. Most days are bad. Good days are rare but euphoric. I mourn for my former self.

Thanks for this. My case has only been moderate, but enough to trash my career and leave me struggling with huge debt incurred in my efforts to live up to my responsibilities. I'm used to some less insightful people deciding that I mismanaged my own life. I still encounter doctors that assume that I'm just depressed - they remind me of Napoleon who believed that his sick soldiers died from lack of morale. I do think morale is important, and at the same time that I've got a real physical ailment that hasn't yet been identified. The book "Osler's Web" explains the long process of denying any reality to CFS in the US, which has had consequences for other country's health policies. My mother was born long enough ago to remember when tuberculosis was generally seen as a lack of will to live, and before that even diabetes was often regarded as psychological.

😂😂😂

Thank you. This is ME/CFS.

Thank you for speaking out for all of us, Krista! -Kandice Dickinson, mild ME since a bout w mono age 12; mostly bed/housebound w severe ME since age 40 (I'm now 61.5)

Thank you for sharing your story

I did not know that I had POTS (which comes with a lot of the symptoms of ME, except the mental fog/brain inflammation is not constant (but I can get it by working now)) when I was in my thirties and had to decide whether to have kids or not, and I remember going through the exact same thoughts. I just knew it was not going to function. I even went to a doctor to see that there was nothing preventing me from having a child (I had been on steady diet of beta-blockers for years by then, not for anxiety but elevated heart rate) and got another set of Holter monitoring done. Nothing but benign arrhythmia/tachycardia (despite the medication). But I knew there was no way I could take care of a child 24/7/365 year on year. I just did not have the energy. Well, the decision was correct, because ten years later I was vomiting and not able to work even the half-time I had been doing a for a few years prior, because of the exhaustion. Today I cannot keep food or liquids in without staying in bed, and the rest of it is just AWOL. My advice, concentrate on enjoying your day. Carpe diem!

Yes! Me I've had ME for 15 years and for me it has been progressive as in I've gotten worse over time. Sadly I believe that the progression of this disease is directly correlated to support from any and every entity. It's fairly obvious the intense stress we all are familiar with? I mean how could this vibrant energetic type a Achiever " who looks fine " really be sick at all? Thanks to family members who for whatever have spread disinformation to say everyone , my family or friends I've obviously become a severe drug addict who faked an illness to be able to be put on disability instead of continuing my career as a Registered Nurse making over 75000/ year in 2005 and taking a literal pay cut of essentially 60 , 000 per year , add loss of any family connection including adult children and of course grandchildren as a result of my disgusting drug addict behavior and obvious mental illness that makes me a liar and a thief. Yea so at 61 and about 90% bedridden alone without any friends or support I've sent this to my daughter let's hope she's in the mood to watch this so at least I know the person who will help me not be put on a ventilator as well as help with the sending my body to the appropriate place for Science research. It amazes me the total disregard of supposed loved ones and friends who feel justified to completely forget and go on with their lives without a whince as I attempt to deal with normal and hard situations that life can bring to anyone yet I'm totally alone and with this disease and still must deal with everything from bed as well as an important phone call makes it difficult to even talk. Let me clarify that I'm by no means willing to accept oh I'm a victim mentality which gets me no where I'm grateful for the support groups mentioned I really want to get behind educating anyone of the severity as well as the basic human rights infringement we must consistently endure!

❤️❤️❤️

I became ill after a flu shot in 2012 I felt feverish and weak. I thought it was just a normal flu coming on but it didn't feel right. After a couple of months feeling really awful I then came down with a crash It felt like my brain and spine was on fire. The pain was horrendous. My extremities had numbness and I lost feeling to one side of my body. I then became partially paralyzed and when the feeling came back into my body I had to cruel around the house .... It was a year of hell. I have never recovered since then. I am now in the 25 percent of severe ME/CFS people. I cannot walk for longer than a minute or two and than is on a good day. I am often completely bedbound for months on end. I cannot even walk to the toilet as that would cause a severe crash

Hello Krista - this is very personal and powerful. Your quote: "It’s time for us to be heard" is real. We have recently helped an ME client with a personal insurance claim. This gave me insight into how significant and challenging ME can be. Your insights are profound - they need to be heard the community, government, doctors and insurers. It’s time for ME to be heard! Bruno

Thank you, I thought what is wrong with me, 😢

I am severe

Thanks For your message

Thank you for sharing your story. It is uncanny how similar yours is to mine. Mine also began with a lung infection/cough/flu. 4 months after major symptoms improved I was still fatigued, just like you Krista. I was told I have Multiple Sclerosis after a number of tests to rule out heart, diabetes, etc and that I need to take medication for it. The MR scan of my brain showed spots so they jumped to that diagnosis but I did a lot of research about MS and that they needed to perform a spinal puncture and a spinal MRI in order to confirm. All negative. So I could be among the many who are walking around thinking I have MS and taking drugs for it that create so many other side effects that any hope of a proper diagnosis would be off the table. My invisible illness is very VERY similar to yours regarding symptoms. Heat sensitivity, brain fog, inability to handle stress, noise, fragrances...the list goes on. I was athletic, happy, and working at a job I loved. Now I am disabled by incredible pain and fatigue. It is so hard to get others to understand what this is and how difficult it is to live in the world with it.

thank you so much for this! wonderfully clear. I hope you feel better....

Thanks for the excellent documentary. (Due to computer problems, I originally couldn't post here, so also sent you a FB message.) I've had this illness for over 20 years and am in the severe category, being mostly housebound. I could totally relate to so much of what you say, including passing out twice in the shower. Also, my doctor 20 years ago told me it was all in my head. I never believed her for 1 minute, saw a specialist at UCLA immediately (I live in Los Angeles), and got diagnosed. Thanks so much for taking the time and energy to share your experience. By the way, technical editor that I am (or was before I got ill)--I want to let filmmaker know that in a few of the online questions he should use word "affect" instead of "effect."

Thank you! I am going to write down the questions and do my own story and post it on youtube/my facebook :) I was diagnosed in August and this video helped me understand more and was very relatable.

This is the best documentary I've seen to pass onto friends and family. It touches on all aspects of this illness. I can relate to Krista as I'm sure many with ME can. I've had this for 31 1/2 yrs. and practically nothing has changed re funding and doctors believing in it. It took me 25 yrs to get a formal diagnosis. I first got online in '98 and it was a blessing to find others after 11 lonely years. My ME online friends are my only support system. I'm in Canada but belong to both CDN as well as US based groups. One thing that I found from the first day online was that they were tackling a name change. Back then most referred to it as the Yuppie Flu. Still a big issue but the (full) name ME is taken more seriously than CFS. I truly wish they'd find a way to incorporate PEM into the name as that's the biggest part of this DD. Help may be on the way. If you haven't heard of Dr. Ron Davis, look him up. He's doing wonders at Stamford. Thanks to all who contributed to making this very informative doc. Best wishes to Krista.

Well done! Thanks for expending so much valuable energy! An accurate and heartfelt sharing. There is hope! I found my husband at about 50% of before illness functionality and broke from not able to work and self paying for medical. He’s amazing and loves me for who I am. I’m housebound now. We grieve what could have been and celebrate what we do get, which is a very, very limited life. I’m so grateful for his love and support. Blessings!

Wonderful!!

Wonderful interview! Thank you, I can share this with friends and family and it will explain so much I'm not able to.

Thank you to the makers of this documentary, and especially to Krista. I've had ME for twenty two years, and I know exactly what the effort would have cost her. You've covered all the important points. That shot of the almost-empty room after asking if she had social support says so much. Krista, I'm a fellow Aussie and I wish you better days. 🌹🌹🌹