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Hey Jennie, how's it going?

Brilliant.

Bio films in bladder??? Im trying allsorts fir this swiss bioenergetics biofilm disruptors

It sucks big-time

I had a tick bite and the bull rash, 15 years ago. I never knew at time that's what it was. I thought if the rash spreads will go to doctors. A week later rash disappeared. A month later I started feeling ill and shattered with a body rash. I then 6 months later had viral meningitis a few times. I never recovered from this so was eventually diagnosed with M.E. Many years later when Lyme was talked about did I realise I was bitten by a tick. I've had 2 Lyme tests in UK and say I haven't got it?

Thanks Jennie for sharing your information with us. I’m hopeful I might finally get to the bottom of my M.E and fibromyalgia dx with some proper and appropriate testing! I’m preparing a letter as I write this. Years of being a pointless pin cushion on the NHS!

Thank you, Jennie and Dr Lambert for this interview. Dr Jack is our only knowagea le Lyme Literature Doctor here in Ireland. We are so lucky to have found him, When No One else realized the problems we have,trying to get diagnosed with Lyme and Co infections. Ann (lymechat -Eire)

I was wondering why we haven’t heard from you. I hope for your quicker recovery.

I had Lyme, I remember how my knees started filling up with fluid as soon as I had pain in my " calf muscles" i would start limping, and 2 days later my knee joints filled up with a lot of fluid. They needed to take it out both times. They did that both times without anesthesia, so I felt the needle every time they moved it around and it was the first time I cried out of physical pain in front of someone. They tested me and I had lyme. Treated me with 2 months of antibiotics. The synthoms were not present right away. It took a year for it to appeare. I was 26... I am 38 now and I hope it didnt cause damage in my muscles, cause after that nothing was the same. I hurt just by walking. Doctors always tell me that Lyme does not affect muscles, but in reality after I had lyme nothing was the same. My muscles acke and they literally tear the moment i move a certain way. I am active, i dont just sit in my office 8 hours a day. I have my own stand up desk, i walk around everyday. But, i wake up very slowly every day at 4.30 am to just use magnesium just to make sure i can get up from bed without pulling a muscle. Many times the pain renders me immobile. Brain MRIs came out ok, neck and heart also came ok. Still, my muscles lower back, back of my knees, shoulders joints, and calfs, never were the same. Thats my fuc@$%ing story. I hate it, and I hate that doctors disregard muscle complications from a disease that was in your body for a longgg time without being diagnosed. Is like, well if there are no studies that prove it, than is not possible.

Lovely content for ME community! Hello from the military 😁

🎉

Judith ☺️☺️☺️I love You🌞🙏🏼🙏🏼🙏🏼🤗🤩

I shall henceforth refer to my own brain frog when I hybridize words/sounds (like 'guise' here), which is very very often.

I am on year 50 of mild/moderate/sometimes severe ME. My best advice is to use your down time to figure out ways to do regular tasks with heightened efficiency: Fewer steps, fewer movements, smaller increments and designate places for pauses. Dr. Nancy Klimas has taken my supplement regime and improved upon it. Infrared therapies are helpful. Don't have any expectation of anyone understanding or giving a crap so you can be pleasantly surprised when someone does. I went 14 years without seeing a doctor and now just get occasional tests to see if anything else is dodgy as there are still no decent doctors near me. Best of luck everyone, and when you are down understand this one thing: Being a sentient being on a planet filled with life in a mostly desolate universe is the rarest kind of privilege...even if it is viewed through a veil of excruciating pain.

I explain the anxiety of ME as a instinctual realization of being "The weak one in the herd" and thus susceptible to predators. I still have family members who still demand that I exercise (Based on GET propaganda) and this depresses me along with the loss of ability to be a positive force in the world. The counterawareness campaigns in the media and medical communities are dreadful and the Michael Sharpe/Per Finks of the world are war criminal level villains still being lauded and awarded by society. It is this insult to injury that is unfathomable to ME sufferers worldwide.

I became ill in 1974 with the "Family Miasma" as my father called it at age 5. I knew before age 10 that the risk of passing it to my own children meant that being a father was to be avoided at all costs. Only achieving a diagnosis in 1994 with the "Yuppie Flu" CFS, I gave my time to finding supplements and helping my father with pioneering Infrared Therapy where we sought to destroy superantigens causing auto-immune response until my father's untimely death. My grandmother was given the common "Hysteria" diagnosis in the 1950's, my father was initially given a Rheumatoid Arthritis diagnosis before the early 90's. The history is longer than many will ever admit. I still can't find a reasonable doctor and have taken to only getting standard diagnostics for people my age for other conditions. Good luck in your work in keeping the search for answers in the forefront.

Loved this so much. Thanks for bringing these two grand lads together, you did a great job! But I have one point I have to raise, please get a sound engineer. If you can't right now for whatever reason but would like one I can ask around for you, I may still know some people who'd be willing to advise or help. 💙

Thank you for your advocacy and articulate messages that need to amplified again and again for the people in the back! One day this will be common knowledge.

Thank you Jennie, David and George. I've been ill with M.E. for 22 years. I'm not as severe as some but this illness has destroyed my life. Even those with mild M.E. lose at least a 50% reduction in the level of their activities. I've written hundreds of poems about how I and others feel and suffer. These poems I've self published over the last ten years as well as writing regular blogs. I would like to see something change in my lifetime but it's so hard to hold on to hope

I am sorry...but im sure noone has mentioned this... proud of what you do and your endeavour to not keep silent... but.... when you where talking about soggy biscuits... your laugh along with your left eye and that lazy eye lid that closes sooner than the right eye lol .. is like omg.. no wayyyy that you can be more gorgeous and attractive..honestly is like everything everything about you is mesmerizing... is crazy... i never saw u smilling just like that.. i wouldnt change a thinggggg about you.. sorry i had to say it

Thank you George, David, Jennie! This idea that you can dismiss invisible illnesses out of hand of course has been going on for thousands of years. I think there are references to it in greek literature. It's very convenient especially if you have a vested interest in invalidating a physiological illness. It really comes down to money, egos, liability, reputations and a tribal or cult like mind set. The people promoting this garbage are not stupid they are acutely aware of all the ways they could be wrong. They simply don't care. The sad part is they are still getting away with it. No end in sight. If the tide ever did turn and the truth came out I doubt even one of them would apologize. George mentioned how after being gaslit he reflected asking himself "am I really part of the problem?". The people promoting this garbage simply don't do that type of thing.

I’ve been waiting to hear such a great interview for 17 years. I knew it would come one day, as I always knew the truth would out eventually, but I wasn’t holding my breath. Other ME sufferers have waited much longer than I have and some have died waiting. Many thanks, David, George and Jennie, for broadcasting to the wider public the details of terrible science and self-interest from a small cohort of highly influential UK clinicians and scientists, which have prevented any chance of meaningful ME research or treatment for decades. Many ME sufferers and a few well-informed medical professionals, who do not have a public platform, have been shouting this into the void for years, but as George explains so well, here and in his written articles, very organised, concerted efforts to dismiss and discredit our voices by certain highly influential members of the UK medical establishment, aided by the Science Media Centre and professional journalists, have made sure that our desperate pleas were not heard or taken seriously. A great medical scandal indeed! As David mentions in the interview, the fact that most of us are so ill has made any advocacy efforts even more difficult. It really does seem that the tide is turning, thanks to voices such as these. I’m of a similar age to David, so I might not see a great transformation in my lifetime (although I still hope) but I will continue to play my very small part and do everything I can to try to effect change for others with ME, including a much younger family member who I love dearly and whose life, which would otherwise hold such great potential, is hugely constrained by this dreadful illness. Thanks again, George, David and Jennie, for speaking out and telling it as it really is!

Those comments from Dave towards the end offer so many meme options it’s unbelievable 😂 let’s get some satirical artists to adopt them and make them come alive. Thanks again Jennie and thanks so much for your great work on this, Dave and George. Wow I truly do beleive that in 2025 the scandal will be revealed in all its glory. Keep talking. Keep sharing and keep beleiving in JUSTICE 💙🦋💙

Thanks so much for this excellent conversation. My initiating virus was many decades ago. I'm a supporter of David Tuller's fine work. He put himself on the front lines when it was a most unpleasant and unpopular place to be. I'm also a fan of George Monbiot's reporting, but have had a conflicted relationship with the Guardian over the years. I'm Canadian, but support and consume journalism from sources around the world, one of them being the Guardian. Several times, I have had to suspend my support because their coverage of ME was often biased and appalling. I made it known at the time that that was why I was cancelling my subscription, but I was whistling into the wind... even at The Guardian. Sad state of affairs. Now, I cannot be truly happy that there is so much more attention, understanding and research because it is only happening because millions more are suffering, including my own stepchild. I am likely too old, and too long an ME patient (45 years), to benefit from what may be discovered through this new interest. We have finally become too expensive to dismiss and ignore, too late for me. That's a bitter pill after decades of withstanding the appalling treatment that accompanies this illness. I just hope younger sufferers, and people newly diagnosed post COVID, are spared the decades of abuse many of us have endured.

I've been living with HIV for over 25 years -- it has not disabled me 1 / 1000th compared to how MEcfs has disabled me -- thanks to Jennie for excellent interview with David and George -- more please!

Has any decent research being done on if the rise in mental health symptomatology with or without a diagnosis of long covid is also actually one of the effects of the damage/ongoing damage from the virus itself. Mostly it is currently either as you say being gicen as an explanation for the symptoms or as an impact of a the medico-social intervention of lockdown this shifting the focus of it possibly being another physical health impact of the virus

Thank you all for this super video 💙✊

Wonderful interview, thank you ❤

Thank you

Brilliant interview all. I hadn't heard of the root metaphor idea. I wonder how we root it out!

Thanks Jennie, David and George - and all who campaign and advocate as best they are able - for your much needed efforts. We must keep this in the spotlight and it feels like there's some momentum building at the moment.

Thank you 🙏

Fantastic conversation, thanks so much to all three of you for all that you do to raise awareness!

One problem with ME/CFS is some of us deteriorate further as we age. Even though it’s said we don’t die from the disease, I think we do… for our lives die. It’s why it’s dubbed ‘The Living Death’ I watched my mother die of cancer, it was only in her last week of life, that her fatigue surpassed mine. I remember 2 weeks before she was shocked at how she couldn’t do anything, and I said to her this weakness and extreme fatigue that’s so overwhelming is what ME/CFS is like. (Apart from knowing its not going to kill you in a few weeks) But the inability for a severe ME/CFS patient to move increases the risk of other killers like stroke and heart attack. And unfortunately if that happens ME/CFS won’t be included on the death certificate. Even though had the patient not had ME/CFS they wouldn’t have had a death from a disease induced comorbidity. Statistics show people with ME/CFS die a lot younger too. So it is killing us. Meaning death is always hovering nearby. Especially those who’ve had it decades like myself. Severe ME/CFS is probably one of the slowest killers, smothering the life out of its victims. A truly vile disease

I will never not find it hilarious that Michael Sharpe gifted us George's advocacy by accusing him of spreading Long Covid by talking about it 😂. Thanks Michael!

Thank you all so much for doing this, I just hope this gets picked up more widely in the media. It feels like the door has opened a crack, and needs forcing wide open! It’s great to hear the discussion, so many important points raised. You’ve given me hope! THANK YOU 🙌🙌🙌

two of the ME community's superheroes. Thank you for all you do and for starting this channel. David Putrino from PolyBio next?

Great guests and amazing discussion. Hopefully the tide is turning 🙏

Thank you so much for bringing this interview together Jennie, excellent trio 💙👊

Great chat here. Makes me feel very positive we are moving in the right direction. It will still take time but compared to a few years ago it does make me optimistic. Thank you

When I went for my diagnosis after 2 years of bloody suffering and lots of trips to my Gp I was actually told they had applied for extra funding to send me for assessment! I was sent to the psychiatrist outpatients department! I was absolutely shocked and the Doctor told me during assessment that because there was no blood test to diagnose that’s it falls under psychiatry… I just sat in my car after and cried. Also after assessment I was reviewed by my Gp and told pacing and lifestyle was what I needed to do.. to this day I absolutely dread visiting my Gp to the point I now get terrible anxiety before an appointment so most of the time don’t bother and i just manage myself day to day. I am actually a health care professional myself and I don’t keep a permanent job now, only work 3 evenings a week, still spend days in bed or days quiet to recharge, I am grateful it’s only mild/moderate but it’s such a lonely condition and it’s never left me, know matter what I try.. I hope so much we will get some answers.. I feel so so sad for this beautiful family what a terrible experience… nothing worse than being told it’s mental when you know that’s not the case.. Of course we suffer mentally as a result of this condition but it’s a real physical condition and I wish so much other professionals and people could get there head around this

Thank you for this. I was diagnosed in 2017 , 2 years after a post viral infection in 2015, lots of test and asking me if it could be mental health issues 😭🙈 No matter what I tried I just couldn’t get any better… it’s changed my life forever and I am someone who has it mild/ moderately. I can’t work full time, 18hrs a week max, it’s a lonely disorder and once I was diagnosed I was just told by my doctor Pace myself, make lifestyle changes and Bye 👋 it’s also left me with a GAD because I knew something was wrong and it took so long to get diagnosed. Thank you for your help.

"Chronic Fatigue Syndrome" AkA ME/CFS patient blood has been banned for donation in 5 countries (Canada, United Kingdom, Ireland, New Zealand and Australia) for about 14 years now, but we still have no public investment in a blood screen to ensure the safety of the blood supply-. Now with 1/2 of LongCovid being ME/CFS several prominent ME/CFS/LongCovid researchers have expressed concerns about the threat ME/CFS and LongCovid blood products pose to transfusion patients. Someone needs to make it a priority to fund a ME/CFS blood screen and study what effect LongCovid ME/CFS is having/going to have in terms blood donation shortages with so many people becoming ineligible to donate all at once.

So beautiful! 😮😍

An amazing interview Jen!!🤞🏻look forward to learning more about this

Horrendous. I'm so sorry that Merryn and her caring family were put through this, as so many others have been. I've progressed from Moderate to Severe ME and am terrified of our NHS. Really grateful to you all for this interview. I've signed the petition just now :)

SO exciting Jennie! You did an amazing job and I learnt so much. I've had M.E. since I awoke paralysed at 19 years old (I'm 56 now) and I've seen and studied so much data over the years, mostly in the beginning supposition because there were no studies or funding for proper studies. But it is being proven more and more that there is mitochondrial dysfunction, there is massive inflammation of the brain, brain stem etc and is does cascade through out the bodies systems over time. To have hope is huge and to it's so exciting to think of the goal of at home testing kits for when we are in 'crash' or PEM. You adaptations to be able to do this interview, knowing there will always be a cost, are so familiar to my everyday too. At the end of the day we can only truly by trial and error find what works for us and sharing those things with others helps us find more possible ways to make our quality of life better. Thank you for your work, your effort and your realistic positivity. Sending Love, Light & Hugs, Pip (Waiheke Island, New Zealand.)

Thank you, this is brilliant

❤ Thank you

Thank you Jennie. This Protocol needs to be adopted globally. Ask any ME patient anywhere in the world how they feel about going to hospital, you will get the same response. It’s terrifying and it’s stressful. You know you will be treated with disdain and disbelief. I got a diagnosis of fibromyalgia and cfs, because my doctor said, having a diagnosis of ME would lead to disbelief and poor treatment. Fibromyalgia is better accepted, and therefore I was more likely to be believed. The problem is Fibromyalgia patients respond to GET, I get sicker. Proper diagnosis and better care is desperately needed worldwide. Take care of yourself. 🦋💙