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

[@LL-wc4wn]

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]

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]

It’s all part of the psyop.

[@nxva8726]

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]

Thank you. Bless you for your work.

[@mokiloke]

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.

[@rowdyblakley8669]

Quite an astonishing presentation. Thank you so much for sharing your understanding and progress

[@berniesander5671]

it seems every me/cfs death should be be studied with a good autopsy

[@forisma]

Agree!

[@forisma]

53:40 Directions for treatment: include antiviral +antimicrobal medications; immunostimulation in a controlled way.

[@karlhans6678]

whats antiviral medication?

[@lauragott2122]

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!

[@Xxn-d4b]

Thank you soo much!

[@jorged4572]

impresive, thank you very much for this fascinating information

[@forisma]

Loved it, thank you so much. I wish science could advance even faster :(

[@forisma]

@Jodie Banks 😢

[@nancypasco1740]

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.

[@cfribance]

Great presentation, scholarly yet easy to follow, exciting possibilities in the research, hope the research gives us answers soon, but it is so complicated!

[@allie54774]

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]

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.

[@forisma]

50:15 Successive infection as a model for ME/CFS disease development ('snowball', could drive many forms of disease)

[@victoriamahon3765]

Thanks, learned a lot. Thank you for sharing.

[@libraryfiles4470]

How to test for all these pathogens 🦠 and reverse engineer the shit out of it? That is the question!

[@lindakelley2676]

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.

[@libraryfiles4470]

What are your thoughts on IDO1 and IDO2 traps?

[@איתמראברהם-ס6ר]

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]

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]

@@SolveME thanks for the reply, I agree👍🏼🙏🏼

[@libraryfiles4470]

We need a pathogen 🦠 genome 🧬 project.

[@reemssmeer-maar-dan-omgeke9028]

Check out open medicine foundation. They have a project about that

[@dominic2446]

IL-6 and TNF-α might be responsible for insomnia and dysregulated sleep.

[@KidCity1985]

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]

Get a spooky2 rife machine and take your viral load down.

[@libraryfiles4470]

No No Spooky 2 rife link?

[@NoNo-zf6tz]

@@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]

Check IGF1

[@libraryfiles4470]

Designer 👨‍🎨 treatments, create that algorithm!

[@themupsmuppet]

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]

1:13:30 was that Mike under a pseudonym? ;P

[@libraryfiles4470]

Seauf Make sure you get all your vaccinations 💉 ;-)

[@themupsmuppet]

@@libraryfiles4470 don't worry, I have & will

[@themupsmuppet]

@WinterGirl it SO is!

[@dirkkatz172]

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.

[@libraryfiles4470]

Hypothalamic dysregulation

[@libraryfiles4470]

Clusters? Vaccinations 💉?

[@libraryfiles4470]

Hormonal imbalance

[@dirkkatz172]

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]

Sounds very unscientific.

[@libraryfiles4470]

What’s really in vaccinations 💉?

[@themupsmuppet]

stuff that keeps us from getting polio and other highly inconvenient things

[@libraryfiles4470]

Seauf If vaccinations are so great, why do we have vaccination 💉 court?

[@themupsmuppet]

@@libraryfiles4470 because nothing is perfect?

[@kasandraharfield9080]

It was a tetanus shot that triggered ME/CFS in my case

[@libraryfiles4470]

Seauf BADA BING