P.S. it was still disappointing that the measurable criteria wasn't discussed...Erratic Cytokine levels and NK Cell effecitiveness that is LOWER than HIV. What is it going to take to get physicians, politicians, etc. to take this disease seriously?

Dawn Lauryn they do now, I think. Still, there is a cure for this. On KZfaq look for DNRS and Gupta program testimonials. For the explanation, check out Causes of CFS/ME with Ashok Gupta, minute 8-38.

@@DawnLauryn Do you know what caused the high fever? Is there a good resource for the markers that you mentioned? Thanks.

retrain your brain with DNRS or Gupta program. As my doctor says, this is a physical disease that can be tackled with mind over matter exercises. I already see improvement after a few days of DNRS.

If you have this condition, there are cures from people who themselves suffered from this. KZfaq DNRS and Gupta program.

It’s funny how whenever she was on vacation or doing something fun, she was fine. But as soon as chores or bills came into mind it was BACK INTO BED AGAIN. Funny how that’s such a coincidence, isn’t it?

@@AdaAdi77 doesn't work for everybody tho

@@livewellwitheds6885 then you need to remove the trauma. I recommend brainspotting. I can recommend a nurse in California.

@@AdaAdi77 , what is brainspotting? I’m interested in learning more about CFS because my daughter has been suffering from depression for almost 10 years now. Lately she’s been very tired. Can’t gain weight, looks very frail, spends her day in bed, no longer walks/ plays with her cats and dogs. Several antidepressants, TMS treatment, vitamins, therapy, and nothing works for her. Two hospital stays on suicide watch. Will try ketamine next. It’s very sad and frustrating.😔

John Rhoads Yet you found the strength to type that.

Well said John Rhoads! Mine started as mono that entered my brain and spinal cord also. Years into this, I'm still surviving. My story is much like yours. Thank you for sharing. Thanks to Jen Brea also. We may not get well, we've suffered so much and fought so hard, we can only hope caring people will find the cause to save our children and those after us who get it. Too many beautiful souls out there to leave them laying in the ditch this illness creates for people. Screamingseagull says "yet you found the strength to type that." ...hopefully praising you for finding the strength to reach out to others when you yourself are suffering. Steven Hawking found a way to type, it's so important to try to stay connected to others if you can.

This is so well said and articulate. Thank you, Fabled Creature. I've had ME for 8 years. Your words speak directly to my experiences.

This is poetic, but it is very accurately described. It is a completely different type of fatigue, compared to other illness i have faced, it's incomparable. Flu fatigue is the closest match, but it's a far cry from the fatigue you feel with cfs. It's a different beast, an unrelenting mockery of your body's capabilities with such a fine balancing point between stuggling and feeling deathly ill. Well said Fabled Creature

sparkplugs au sparkplugs And well said right back at you. Thank you for the compliment, I actually thought your explanation was amazing. We're in this together and we know it when we see it. Sorry you're going thru it too.

Oh well. The chick in the video is cured, she reckons Just do what she did and you'll be cured, too.

@@aussiesparks Oh well. The chick in the video is cured, she reckons Just do what she did and you'll be cured, too.

retrain your brain with DNRS or Gupta program. As my doctor says, this is a physical disease that can be tackled with mind over matter exercises. I already see improvement after a few days of DNRS.

@@AdaAdi77 LOL You are just perpetuating ignorance. You don't realize how insulting, dismissive, and hurtful you are being with your suggestion.

Heidi A. Thomson BSc Life Coach you are the ignorant one!!!! I am already doing DNRS and seeing improvements! My doctor who diagnosed me is a specialist in organisational, environmental and preventative medicine. He is an MD and a specialist, NOT you. Have you checked the programs?!!! KZfaq DNRS and Gupta program!!! On KZfaq Gupta and Causes of ME/CFS minute 8-38 provides the explanation. If you have any scientific knowledge and basic understanding of neuroscience, you will get it.

Heidi A. Thomson BSc Life Coach also, my doctor recommended EMDR and said a patient of his, a nurse, recovered after six months. Well, I tried EMDR for six months and I did not like the therapists and I did not see improvement so now I am interviewing in both Canada and the States for an EMDR therapist and I am down to three good ones: one in the States and two in Canada. Again, if you know a bit of science and, in particular, neurophysiology, you will see the value in my doctor’s suggestions.

@@AdaAdi77 Pretty ignorant to suggest cures when many people are being diagnosed with MEcfs with varying initial events. Researchers are just beginning to learn and understand the biological basis and physiological impacts of this disease. So what one "cure" works for some demographics with varying triggers and biological basis won't for others. The important focus at this point is that not enough reseaech or medical support was available when ME emerged and it was pathologized. I resent your comments because I have suffered from ME since the outbreak in the mid-eighties. For you to come along and think you know my history and experience is foolish, igonrant, and hurtful. I am not dissing EMDR and I am happy you and others have found relief. One day, all of us lumped into MEcfs will be sorted into different diseases. At least that is my hope. What I have experienced as ME is not what others have experienced in recent decades. I wish you best of luck and improvement in your health and wellbeing.

Don't be jealous of physical beauty (I am, too, the ugly duckling!) LOL I think she got the attention because of her husband who had an interview with Oprah because of his job. Her PhD research skills definitely helped in finding out about the invisibles. Anyway, there are cures for this sickness. Retrain your brain with DNRS or Gupta program. As my doctor says, this is a physical disease that can be tackled with mind over matter exercises. I already see improvement after a few days of DNRS. I also do EMDR in therapy and EFT in therapy or at home. This is a limbic system injury and the brain is in a survival mode and does not have energy for anything else.

She’s full of shit , that’s why she’s so severely affected

It took someone like her to get the film made, but not at all for the reasons you cite. Most of us with this disease would not have made a film of themselves. When I watched it, I was glad she had the resources, knowledge, support and funding to make this film , and the bravery because quite frankly you need to be very brave to make a film of yourself this way. Every slice of the film was a push to have the courage to film and include for the public. Secondly, the comment on her looks is not appropriate at all. She is not an actor, nor famous, not previously famous and not from such a background nor her husband besides the groups he was involved with through Harvard. That actually shows a predjudice in yourself you see it that way. I hope you can learn to see it another way, and be supportive rather than divisive in this community.

Jennifer Brea also didn't have ME/CFS. She had thyroid cancer and tethered cord syndrome. She had surgeries for both and is nearly back to normal.

Someone should answer for this abuse, too many people with ME have been crippled by psyche 'treatment' and left to suffer. I hope things have improved for you.

ME G93.3 Thank you. Still sick but allowed to live with dignity. I hope that can be the same for everyone.

I am so sorry. Please try these four options that my doctor recommended: EMDR, EFT, DNRS, Gupta Program. I do the first three and also listen to Gupta, who has the best explanations for the sickness. DNRS and Gupta are online and each costs around $300. EMDR I do in therapy. I see improvements after a week of minimal exercises with DNRS. Check for testimonials, they are jaw-dropping, such as this one: kzfaq.info/get/bejne/oKh9aqZqutSmaKc.html

@@AdaAdi77 Thank you for kindly sharing what has helped you. I hope others see it. I was fortunate enough to get into EMDR treatment in a trauma unit. Myself and the very qualified specialist psychologist worked extremely hard for 4 years. He was going to lectures by proponents at the forefront of technique to keep up with latest advancements...sadly, for me it hasn't worked. Some matters eased but what has happened has been so labyrinthine that a gazillion other layers popped up...nasty stuff. That's not being negative about the process and I know it has helped so many and needs to keep rolling out so those who can be helped can access it. Obviously, on a personal level I'm devastated. DNRS and Gupta are new to me...I'll look them up and see what it's all about. Thank you. All the best for your own growth, evolution, and joy. x

JW Suicides WOW!!!!! Thank you for your message. I am so sorry EMDR has not worked for you. Don’t give up. My doctor recommended these four things: EMDR, EFT, DNRS and Gupta. I tried EMDR for six months with two therapists in parallel and it has not worked out. I blame the therapists because I had improvements and then they made mistakes so I withdrew. So I have been reading EMDR literature to see what kind of therapist I need to look for and also contacted about twenty therapists in the States and in Canada and interviewed some and I am down to three potential matches. I understand you, I have been looking for a good therapist for years... if I find someone good, will let you know. :) I am very picky. Gupta gives the best explanation of the sickness in a KZfaq video: Causes of ME/CFS with Ashok Gupta (minutes 8-38) but I personally prefer DNRS. I was very reluctant and dismissive but it’s working! In spite of my distrust. However, the success rate with DNRS is 90% and with Gupta is 2/3, according to the program creators so I have a theory that people with emotional issues may not recover as easily as “normal” people whose brains are triggered but they have this solid basis in childhood attachment to parents. That is my theory. That is why I am looking for trauma processing through EMDR (or it could be EFT and hypnosis - I am talking to an university prof of psychology and she swears by these two), in tandem with neuro retraining. Gupta talks about meditation and I am not an adept, so that is why I stuck with DNRS. But the idea is that this is doable. It may take longer for you and me than for Brea, but it is doable... KZfaq testimonials for DNRS and Gupta on KZfaq; my jaw dropped. I got rid of POTS, of severe anxiety

AdaAdi77 1 second ago retrain your brain with DNRS or Gupta program. As my doctor says, and he is a specialist in work, environment and preventative medicine, this is a physical disease that can be tackled with mind over matter exercises. I already see improvement after a few days of DNRS. DNRS costs around $300 and so does Gupta and they are online. Check out the testimonials, they are unbelievable.

AdaAdi77 1 second ago retrain your brain with DNRS or Gupta program. As my doctor says, and he is a specialist in work, environment and preventative medicine, this is a physical disease that can be tackled with mind over matter exercises. I already see improvement after a few days of DNRS.

AdaAdi77 Many ME patients have tried it. I didn,t hear from one if them to have made ANY improvement on it.

Kazynski then there may be an emotional component, as well. There is an emotional component for me so I also use EMDR to remove trauma. You should try yourself because we are different. The DNRS creator says 90% of the clients healed and the Gupta creator says two thirds healed. Check out this video: Causes of CFS/ME with Ashok Gupta. To me that is the best explanation of what is happening. However, DNRS wants you to have these characteristics: no depression, no recent mourning or grieving. So I don’t qualify for the program! The Gupta program wants you to have these characteristics: optimism, perseverance, acceptance of relapses, no perfectionism and others I can’t remember - I don’t have any of these! Also, I hate meditation. So, when I heard this word in the Gupta program I cringed. So I am not touching that for now. But my understanding is that this is a retraining of the brain based on stimulus-response, removing some old responses and creating new ones. And you need to practice every day for at least six months but more realistically a year. So even though I am depressed and I have no positive outlook on life etc, I feel the benefits from doing this. I do DNRS and not one hour a day but maybe 10 minutes total and I am controlling the brain-body loop by not paying attention to my body symptoms and thus not sending my brain signals that my body is not ok and then telling my body these are exaggerated symptoms when the brain messes up. So, with repetition, you undo those associations in your brain that are caused by neurons that fire together for a long time. But, again, I am a psychiatric patient, so I Don’t believe this can solve it for me, in spite of my progress: no more POTS, no more severe anxiety, no more panic over new physical symptoms, increase of physical activity and hope. I now am looking for a good therapists for EMDR and I am down to three names - because my childhood trauma gets activated every day. I also use EFT. I don’t believe in EFT too much but it was a 7-minute session of EFT on the internet that got me out of bed last year when I had my first severe episode. I remember lying there for hours and then 7 minutes of this and I would jump out of bed. So, try these on your own. We have our own blockages; we are the locks and we are the keys, so to speak. My doctor said these were the options: EMDR, EFT, DNRS and Gupta. A patient of his, a nurse, healed with EMDR in six months. Well, I did six months of EMDR and I did not improve because I distrusted my therapists. So I am back to square one but I have contacted these twenty people in the States and Canada and I am zeroing in on a good one, after reading a lot of specialty literature and realising what my needs were.

Kazynski oh, Hypnosis is another way to access the limbic system and thus the autonomic nervous system. I forgot, but my doctor from Chicago, a specialist in behavioural medicine, only used medical hypnosis to treat his patients. He explained how the organs start to break down because the brain starts to send the wrong symptoms. So we need to basically biohack our brains and create new neuronal circuits. Now I understand him, 15 years later... I did not stick with him, unfortunately... Also, one of the psychologists I contacted and who is an university professor offered hypnosis and mentioned this person who healed chronic fatigue syndrome with hypnosis - watch her talk here: kzfaq.info/get/bejne/m9igg7R1uL2oYJ8.html so whatever method you find useful, this is about changing your neurophysiology and it is possible. See it as a fun game: biohacking the brain to remove erroneous conditionings in your physiology. I have been reading neuroscience for a while and this all makes sense. Don’t give up! Do research and most importantly experience yourself. Give yourself time- 6 months to a year. Listen to the scientific explanations on the limbic system cross-wiring of signals and looping. I did not believe I could do it (I hate positive thinking!), but I see results - in spite of myself! Lol

AdaAdi77 I have a physical ilness.my blood work is really bad so I dont think hypnosis is the cure it all for me.

Ok bot

Are you 100% back to normal?

true! As Chopra says: listen to the diagnosis but not to the prognosis.

KZfaq these two programs: DNRS and Gupta program. Look at Minute 8-38 on Causes of ME/CFS with Ashok Gupta.

What did she had

allan knight what do you mean?

he probably means that bec there are many ME patients who are more severely affected than Jen was,even though she was definetely not considered as mildly affected,she could do things that some of ME patients never ever would be able to do.From the outside,its hard to grasp this ilness..

.... and you are 100% id10t.

you get aches and pains so it may be less painful to sit this way

She had POTS (Postural Orthostatic Tachycardia Syndrome), as many people with ME/CFS do. The blood in your legs cannot easily get back up to your heart when sitting or standing. Crossing your legs mitigates the amount of blood that pools in your legs.

She had POTS (Postural Orthostatic Tachycardia Syndrome), as many people with ME/CFS do. The blood in your legs cannot easily get back up to your heart when sitting or standing. Crossing your legs mitigates the amount of blood that pools in your legs.