Solve M.E. Webinar: ME/CFS in the Era of the Human Microbiome

  Рет қаралды 9,543

SolveME

SolveME

Күн бұрын

Пікірлер: 66
@LL-wc4wn
@LL-wc4wn 5 жыл бұрын
This research is where we will get answers for me/cfs and chronic conditions. This researcher is smart. I made $500,000 in 2012 (malingerer?) i now live on government pension of $25,000 a year because i can no longer work due to pain and fatigue from me/cfs. When i watch this video it makes me angry at Simon Wessely for incorrectly psychologizing this disease when there are so many ways pathogens could be causing ME/CFS and chronic illnesses that dont show up in blood tests.
@rowdyblakley8669
@rowdyblakley8669 5 жыл бұрын
He has very effectively blocked both research and treatment. The only option my doctor gives me is Wessely clinic in the Maudsley London hospital which assumes that I am hysterical. Interesting back story for our esteemed influential doctor:- "Simon Wessely is the son of Rudolf Wessely, one of the Jewish children who managed to escape the Nazi regime through the help of Nicholas Winton."
@libraryfiles4470
@libraryfiles4470 5 жыл бұрын
It’s all part of the psyop.
@nxva8726
@nxva8726 5 жыл бұрын
Great talk. A lot of research findings put together in a condensed form by Dr Proal. At least we now know that we don't know a lot. Dr Proal's words show enthusiasm, passion and initiative. We need more young driven researchers like her. Thank you all at Solve CFS for your hard work. Very grateful.
@germanbrethren9320
@germanbrethren9320 2 жыл бұрын
Thank you. Bless you for your work.
@rowdyblakley8669
@rowdyblakley8669 5 жыл бұрын
Quite an astonishing presentation. Thank you so much for sharing your understanding and progress
@mokiloke
@mokiloke 4 жыл бұрын
Unfortunately for COVID long haulders there is now Post-Covid. Though on the flip side this is a blessing in disguise for the CFS/ME community, where research and funding will hopefully be increased to find causes and treatments for all of these post-Viral syndromes.
@Xxn-d4b
@Xxn-d4b 10 ай бұрын
Thank you soo much!
@berniesander5671
@berniesander5671 5 жыл бұрын
it seems every me/cfs death should be be studied with a good autopsy
@forisma
@forisma 5 жыл бұрын
Agree!
@lauragott2122
@lauragott2122 3 жыл бұрын
So comprehensive and covering many bases. Thank you Dr. Proal for explaining all this in such a clear, big picture scenario and in a very understandable manner! I will definitely follow you. I love your excitement and enthusiasm towards putting this ME/CFS puzzle together. Thank you for your good work! Keep it up!
@jorged4572
@jorged4572 5 жыл бұрын
impresive, thank you very much for this fascinating information
@nancypasco1740
@nancypasco1740 4 жыл бұрын
Thank you for sharing your research and thoughts! Informative and gives hope! Wish more was happening in Canada. So many people still thinking it's a psychological illness.
@forisma
@forisma 5 жыл бұрын
Loved it, thank you so much. I wish science could advance even faster :(
@forisma
@forisma 4 жыл бұрын
@Jodie Banks 😢
@libraryfiles4470
@libraryfiles4470 5 жыл бұрын
How to test for all these pathogens 🦠 and reverse engineer the shit out of it? That is the question!
@cfribance
@cfribance 4 жыл бұрын
Great presentation, scholarly yet easy to follow, exciting possibilities in the research, hope the research gives us answers soon, but it is so complicated!
@forisma
@forisma 5 жыл бұрын
53:40 Directions for treatment: include antiviral +antimicrobal medications; immunostimulation in a controlled way.
@karlhans6678
@karlhans6678 3 жыл бұрын
whats antiviral medication?
@victoriamahon3765
@victoriamahon3765 5 жыл бұрын
Thanks, learned a lot. Thank you for sharing.
@allie54774
@allie54774 Жыл бұрын
I ended up with this illness after the second time I had glandular fever. I had it once as an 11 year old and caught it again a couple of months before my 21st birthday and basically never really recovered. My mecfs symptoms where fairly mild though until I had children now they are worse, more moderate symptoms :( I'm grateful I'm at least able to get out of bed every day, walk, & look after myself (just about!) & my two children.
@forisma
@forisma 5 жыл бұрын
50:15 Successive infection as a model for ME/CFS disease development ('snowball', could drive many forms of disease)
@forisma
@forisma 5 жыл бұрын
44:20 Different pathogens disregulate these different receptor complexes at different parts of the pathway. So, e. Coli can disregulate Complex 2, but Rebella virus can disregulate Complex 4, and Rotavirus can disregulate Complex 6, but so can m. tuberculosis. The takeaway from that is that if there's a patient suffering from mytocondrial disfunction that's driven by disregulation of this pathway they can harbir different pathogens. One person could have e. Coli, one person could have rubella, one person could have hiv, one person could have s. Pneumonie. As long as those pathogens disregulated the same pathway, the end result will be fairly similar and similar simptoms would develop. No two patients with ME have to have the same two pathogens or mix of pathogens to allow a similar illness to occure.
@KidCity1985
@KidCity1985 5 жыл бұрын
I've had it 24 years, the straw that broke the camel's back was CMV. I had several viruses on board already. I was running a large daycare, raising 3 small boys , had a long commute with them and was in the process of moving. My Dr at the time kept telling me I would be well soon, nope.
@NoNo-zf6tz
@NoNo-zf6tz 5 жыл бұрын
Get a spooky2 rife machine and take your viral load down.
@libraryfiles4470
@libraryfiles4470 5 жыл бұрын
No No Spooky 2 rife link?
@NoNo-zf6tz
@NoNo-zf6tz 5 жыл бұрын
@@libraryfiles4470 www.spooky2-mall.com/product/spooky2-starters-kit/ this is what I started out with, have a few more now since I got results. Treating the XMRV virus was the big one for me with CFS.
@libraryfiles4470
@libraryfiles4470 5 жыл бұрын
We need a pathogen 🦠 genome 🧬 project.
@reemssmeer-maar-dan-omgeke9028
@reemssmeer-maar-dan-omgeke9028 4 жыл бұрын
Check out open medicine foundation. They have a project about that
@איתמראברהם-ס6ר
@איתמראברהם-ס6ר 5 жыл бұрын
I suffer from Chronic Fatigue and have a question and would really appreciate it if someone could answer 🙏🏼 Here's the deal: Recently I read a lot about how a sense of being socially isolated and sense of loneliness can harm our health (lowering immune system function, increasing emotional distress and anxiety, cause interference in sleeping patterns/poor quality sleep etc). I have an opportunity to join a student village, but I highly afraid that being highly or even moderately socially active (events, meetings, volunteering responsibility etc) would harm me and will worsen my health condition (tiredness,pain etc). So here's the question: Should I join the village or make an effort to be socially active in other ways or should I be alone Most of the time of my recovery to allow my body to heal (and not pushing myself mentally& emotionally in some degree, to meet the social requirements) and then, hopefully one year from now, return to be socially active?
@SolveME
@SolveME 4 жыл бұрын
Hi, thank you for reaching out to us. Solve M.E. can not make recommendation. However, we do believe that it is important that anyone who suffers from ME/CFS become very mindful of their sensitivities and their energy allowances. The goal to maintaining a positive health comes from being aware of your "Boom and Bust" cycles and then learning how to avoid it by pacing or staggering one's activities in order to conserve energy or reduce exertion. These are things to keep in mind when one is considering joining group activities.
@איתמראברהם-ס6ר
@איתמראברהם-ס6ר 4 жыл бұрын
@@SolveME thanks for the reply, I agree👍🏼🙏🏼
@lindakelley2676
@lindakelley2676 3 жыл бұрын
I traveled to China and later tested positive for tuberculosis, but it’s not active, do these pathogens do damage if exposed and not active? Also, would battling walking pneumonia for 8 months make one susceptible to ME/ Fibro, I got il after a car accident and never got better, so the MVA was the trigger, but I had pneumonia prior to the accident and it took months to recover. The car accident as the trauma and subsequent neck and back injuries and surgeries brought it on, I just never got better but I’m wondering if viral illness or dormant tuberculosis can predispose.
@dominic2446
@dominic2446 4 жыл бұрын
IL-6 and TNF-α might be responsible for insomnia and dysregulated sleep.
@libraryfiles4470
@libraryfiles4470 5 жыл бұрын
What are your thoughts on IDO1 and IDO2 traps?
@libraryfiles4470
@libraryfiles4470 5 жыл бұрын
Designer 👨‍🎨 treatments, create that algorithm!
@dirkkatz172
@dirkkatz172 4 жыл бұрын
The cause for me was the microwave oven. This may sound unbelievable: the internet states that the use is harmless or that the danger is cancer or a reduction in vitamins. The first consequences were: pain in the neck, fatigue, sore throat, depression, ..... After 3 months without a microwave oven these symptoms disappeared. Consequences are greater the closer the microwave oven is to you: if the oven is right next to your dining table, for example. If you bring this to your members' attention, those who wish can give it a try and let you know about their experiences. Everyone can now participate in the study! People will not think much of CFS. Organs are not damaged. It looks more like an internal strangulation. I don't know if that can be found. The muscles tense under the influence of microwaves (microwave), Hence the pain and the intestines are too tense, which makes digestion poor and too few vitamins are absorbed. In the throat one has pain due to the tensioning of the muscles there. Be careful not to cure other diseases with fatigue for CFS.
@themupsmuppet
@themupsmuppet 5 жыл бұрын
her enthusiasm is infectious ;D perhaps this is a 'doh' comment but has anyone seriously looked at iodine? turns out that for me, it's a teensy more complicated to replenish it than just taking some kelp & it could explain lots of ME related issues like POTS (since its link with potassium, causing muscle issues and esp the heart) and not being able to detox from mold or fight bacteria
@themupsmuppet
@themupsmuppet 5 жыл бұрын
1:13:30 was that Mike under a pseudonym? ;P
@libraryfiles4470
@libraryfiles4470 5 жыл бұрын
Seauf Make sure you get all your vaccinations 💉 ;-)
@themupsmuppet
@themupsmuppet 5 жыл бұрын
@@libraryfiles4470 don't worry, I have & will
@themupsmuppet
@themupsmuppet 4 жыл бұрын
@WinterGirl it SO is!
@libraryfiles4470
@libraryfiles4470 5 жыл бұрын
Check IGF1
@libraryfiles4470
@libraryfiles4470 5 жыл бұрын
Hypothalamic dysregulation
@libraryfiles4470
@libraryfiles4470 5 жыл бұрын
Clusters? Vaccinations 💉?
@libraryfiles4470
@libraryfiles4470 5 жыл бұрын
Hormonal imbalance
@dirkkatz172
@dirkkatz172 4 жыл бұрын
Dear, now the cause of Chronic Fatigue Syndrome is found: radiation of microwave-oven(magnetron). To stop you have to eliminate the oven out of the house. The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor. The distance between an oven and a person is very important.After a 3 months without microwaves health becomes better. The victims are more sensible and also the distance between victim and oven is important.After long time obesity is possible. (Also possible: nightmares, change of character)Most people with a microwave arent chronically ill because some people are more sensitive for microwaves, also the distance person/microwave is very important. The oven in another place is more safe. The radiation become less when the oven gets older.Some ovens give less radiation then others. In Russia the less radiation is allowed by law. I had much very positive reactions, some people recovered entirely. Sometimes not because it was being tired through other causes or diseases,not the real cfs.
@mokiloke
@mokiloke 4 жыл бұрын
Sounds very unscientific.
@libraryfiles4470
@libraryfiles4470 5 жыл бұрын
What’s really in vaccinations 💉?
@themupsmuppet
@themupsmuppet 5 жыл бұрын
stuff that keeps us from getting polio and other highly inconvenient things
@libraryfiles4470
@libraryfiles4470 5 жыл бұрын
Seauf If vaccinations are so great, why do we have vaccination 💉 court?
@themupsmuppet
@themupsmuppet 5 жыл бұрын
@@libraryfiles4470 because nothing is perfect?
@kasandraharfield9080
@kasandraharfield9080 5 жыл бұрын
It was a tetanus shot that triggered ME/CFS in my case
@libraryfiles4470
@libraryfiles4470 5 жыл бұрын
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