Riksförbundet för ME-patienter (RME) ger stöd och råd till ME-patienter och deras anhöriga, verkar för en bättre vårdsituation och för att kunskapen om sjukdomen ska öka. RME följer och stimulerar forskningen och anordnar varje år en forskningskonferens där forskare och vårdpersonal delar med sig av ny kunskap och får nätverka.
I'm 73 years old. Disabled 34 years ago with ME/CFS. Every day I die, yet I live. Jesus is my only hope. One day, I will see Him face to face. Oh, what a moment!
I’m bedridden most of the time. I can go to the bathroom and once a day to my door to get the food I order. I can leave my apartment once every 3-5 months. Doctors have never given me any medication. Does anyone take any medication or supplements that help?
I too suffer with severe M.E didn't think things could get any worse and abracadabra i had a aneurysm 😢 had brain surgery 4 yrs ago and im still waiting for my 6 week check up and i should have had 8 scans by now. Asked my gp 2 yrs ago for a urgent referral to neurologist as i hadn't been given one. That was two years ago. My whole personality has changed and lost so much . New gp came out said she didn't think this was right and was going to investigate why it has happened. That was 4 weeks ago tomorrow. I thought i was going to finally be believed about something, there was solid proof but nope still ignored in bed in my dark room.
In the book "Betrayal of the Brain" the concept noted here was called "HYPOPERFUSION" of the brain. An old finding, evidently we are going nowhere on this agenda. Meanwhile most patients are being stripped of assets and hunted for sport by way of homelessness. We don't care so we omit this discussion which is the one most important, the culture's embrace of genocide.
2 papers published Tulane Hypermobility Clinic FOLATE DEFICIENCY MUTATION in EDS & second in LongCOVID, we all now know the enormous links to EDS/ME/CFS. This is not just ME/CFS it is ME/CFS/EDS we now have HSD/EDS added, many have 2 types called crossovers
Stort tack till Jonas och hela teamet som gör dessa forskningar! Det är så konstigt att detta inte ges några bidrag till av staten!! Det borde vara väldigt angenämt när det ger så svåra funktionsnedsättningar hos dubbelt så många än de som har MS… men det är väl för att de väljer istället att tro att detta är en inbillningssjuka och alla dessa (50-10 tusen personer??) bara behöver en spark i röven… men de lyckas ju inte med det heller så vad väntar de på??
Ja väldigt tråkigt att Me blir så nonchalant bemött. Jag kämpar nu med Trygg Hansa och min sjukförsäkring. 😢 Trots att jag är utredd och har fått diagnosen på Brageé skriver dom att jag inte uppfyller Canadakriterierna och att andra sjukdomar inte är uteslutna.
Kommer Sverige införa ICD diagnos koden för ME så som USA gjort? Tror det skulle bekräfta diagnosen hos läkare och inte bara avfärdas så som hittepå. All forskning inom ME är så fascinerande och jag ser fram emot att veta mer om båda studier och även framtida studier.
I understand this is far fetched, but "IF" the GI tract pans out to be a prime reservoir and "IF" a reliable method is developed to localize the reservoir, perhaps gastrectomy, segmental colectomy or small bowel resection could prove to alleviate the horrendous symptoms.
Greatest thanks to everyone at PolyBio for your ongoing research! It is appalling that at a governmental level (ie RECOVER initiative) that exhaustive biopsy studies of viral persistence, particularly regarding a very easily biopsied site such as the GI tract, have not been completed to date.
Thank you for your continued work to try and figure out this extremely complex disease. To have a biomarker would be life-changing for millions with ME (& now the huge LC community too). 💙🙏💙 Hopefully you can find this going forward . We're being denied critical support until this happens 🤞 Very valid point about lucky recovery in first year or so for a few, especially where patients attribute recovery to magical thinking & then blame those who don't get better for not wanting to 🤔 It's created a social situation where we're neither believed by medicine, our peers who are lucky to recover, and society at large because this is just not understood by most. Your work is absolutely critical for these reasons among many. 💙🙏💙
Im an Original Long Hauler - ME! At least is what I comport with yet the biggest hmo ever, KP doesn’t even have this in their system - so it literally doesn’t exist to them. As Dr Byron Hyde suggests, insurance guys ran the numbers and found a back door called cfs - which IS in KPs system and refers straight to the Mental Health Dept. If you haven’t interviewed Dr Hyde he imo has been crying enterovirus is the missing piece for decades and has interacted with Dr Chia . I got a SPECT; it’d be incredible to tie in the brain damage we now maybe all have, as shown on his book cover this maybe another biomark?. Mine was a fast takedown “flu” in august 2008 I’ve never recovered from; I had the live polio vax in the 60s and knew kids with it, Ive wondered if the possible enterovirus in late summer polio season reactivated polio? My muscle wasting from sternum down but sparing my arms fit a polio pattern. I get windows of clear brain less sweat n vertigo time but sure would like to send you my curious observations as a relentless self tester. I was in top athletic condition at 168 and just turned 49 but fell to 126 not being able to match the previous month due to pain but having to work hard operating several bizzes, competitive in multiple sports plus very athletic building crews plus training on a big farm n each op begins at 3 with visible biceps at 6. So Im not deconditioned as I’ve worked hard but slip bk, or could preload failure explain wasting of 40 lbs muscle in a few years constantly using nauseating sore muscles? With tbi I dont get much time with the alien asleep… so a huge issue is that gajigabits are in several million brains who like me are intact but it’s impossible to force a searing brain; it hurts to work whether physical or cognitive, but mental or emotional is harder. It triggers instant vagus take down pain that forces holding catatonic for hours to un-grip. So there’s a wealth of data if people like me who can think clear a few hours usually wee hours, details of symptoms, experiments.. for instance Im blown away how helpful going carnivore was, yet not a doc in 3 dozen puts food ahead of a drug, so this is a huge issue not getting a foundation first. After so many issues trying to cope with pain I had to find another way, and found several. Thanks so much for your work, this gives a reason to stay awhile longer..
You can see from the comments most folk haven't got a scooby doo . Let me explain some facts. CFS dies not exist , so plop they idea into file 13. M.E dies however . And the simple fact here is that it was a man made virus with two countries holding responsibility . From the 1950s. Right next the solution to m.e . Is simple .....Treat m.e as an auto immune illness. Cure it using those fundamentals. We know what's happening in the body and why. Exercise is half baked. It's a serious automimmune illness to effect that correctly . The patient must take total rest. Total rest . For anything else leaders to further deteriate the immune system. Stop using dual terms if you don't know what you looking at you are lost before you start. I had m.e for 15years ....before effecting an auto immune cure. That auto immune cure uses no chemical man made cack. You build the immune system and then apply the solution in stages. Like cancer but more complex with more important realities that need to be addressed for the causation of the man made illness. Everyone avoids both the history and the cause and thus are clueless. Get a grip,on the cause ......get a grip on the fact it's simply auto immune with the complication of wiping out the cause on the brain using appropriate measures. Over a short period of time the viral cause can be wiped out. But it takes years to get the body back to homeostasis. I am always shocked at the ignorance of the terms and the severity of the difference between the two. Now folk are confusing everything with everything ......because they have no idea of causations and effects. 13:02
How do we fix it tho ...I am plagued with immune issues with my. CFS including AI thyroid disease. I feel that my immune system is fried. When I 'exercise" I get sick. My thyroid and tonsils are swollen and the inflammation will not go down. There is def an immune response happening in my body. I am looking at going on the AIP diet to try and quell some of the immune reax to foods. U don;t have to tell people with CFS that their immune system is involved or in trouble somehow. I have known it for years. Have had CFS for years,. No help from any medical people at all.
Professor O'Leary's wisdom and academic work in bioethics and healthcare is very important and fortunately her work is garnering more attention from both the academic world and the media world in this respect.
Absolutely appalling that only a handful of people have seen or watched this hugely interesting and important update. Thank you so much for presenting it in a way that a layman can just about keep up. Me, I'm a long hauler and can identify with so much that you talk about. I find Herpes flareups , erratic heart rythm, fatigue, erratic blood pressure, muscle akes etc, and all these can come and go in terms of severity singly and in combination..
Clearly an asset to the field. Even if worst case scenario he is not presenting a 100% smoking gun he is demonstrating facts which must be accounted for in any other theory. Would be nice to hear from him more frequently.
I would like to see more research on this finding. We are using Nattokinase for possible clotting issues after COVID. We have experienced some joint and ligament pain, inflammation and failure. We take collagen to facilitate growth of collagen connective tissue. I've began looking for a good source of silica because the regeneration of collagen doesn't seem to be very robust. I'm wondering if there might be a better approach.
17:40 Good idea to include the spouse! Think our whole family has been affected by the mold in our cellar. Too bad though that they're often not of the same sex.
Be aware that HHV6A was discovered in the 1985 Lake Tahoe "original CFS" outbreak. NOT in "ME" This is part of why the Holmes committee couldn't use the ME term. Know this and understand. Do not argue.
Thank you so much for publishing the research information. My ME/CFS symptom path started after contracting Viral Meningitis in 2009. In hindsight, it was mild/moderate over the years. In 2017 I ended up with Systemic Envenomation caused by a Redback (Black Widow Spider) bight and was severely ill for 6 weeks. This caused severe ME/CFS symptoms. Following the Covid Vaccine in 2021 I relapsed. In 2022 I was finally diagnosed with ME/CFS, PEM, and POTS. This year I ended up with a relapse caused by Covid and thought I wouldn't make it. All in all,I have been bed & house-bound for most of the time since 2017. The new research gives hope that a cure can be found for this horrible disease.
