Don’t get me wrong I feel very sorry for people with Long Covid but has it really taken a global pandemic to get any help for people with ME/CFS who have suffered for decades!
Yesss, this pisses me off to no end! But I try to turn it around, and think about how screwed all those Long Covid patients must feel: ALL of their suffering could've been prevented, if only medical 'science' had listened to us ME patients... There's currently a health care crisis brewing in my country, for a large part because of so many health care professionals being home, unable to work, with Long Covid... AAARRRGGH! Very f*ckstrating.... However, with so many people out of the running, they're forced to come up with something usefull that will also benefit us. So, that's something, at least.
@@Judith_Remkes I agree with you completely. The long covid patients could also have been helped if health care “professionals “ had taken note of the NEW NICE guidelines and not forced them into CBT and graded exercise which, as any person suffering from ME/CFS will tell you, just makes things worse with Post exertional malaise. It took long enough to get the guidelines updated and yet STILL they are being disregarded! It is an absolute travesty how we have been treated by the NHS in the UK 🇬🇧
@@Judith_Remkes Indeed! You are so right! I feel the same way: LC could have been prevented had we with M.E. been listened to ages ago. It also pissed me off that it took a global pandemic and lockdowns for people to begin to grasp the notion of isolation. Having M.E. the isolation has been one of the most difficult things for me to bear. However, unlike healthy people in isolation, the nature of M.E. is such that you often are too unwell to communicate with others by any means at all. No empathy whatsoever from even those closest to you. Then when they had to endure a few weeks of restrictions all hell broke loose. After all the lectures I'd received over the years (easy to deliver when it's someone else who's suffering) it absolutely made my blood boil. It made me realise just how much pent up anger I had which had been slowly accumulating over the years and it just spilled over. I couldn't bear listen to people whinge about not being able to go to the pub (although I know not everyone found lockdown unbearable for superficial reasons). People were shocked and annoyed with me because I wasn't happy that they finally "got it" (so patronising: like they expected me to give them an award or something which only made me angrier). However, once the pandemic was over we became invisible again to those healthy enough to rejoin society. Now that covid is "over", those who are still clinically vulnerable have once again been shoved to the side and expected to just put up with the selfishness of others (I've had engineers in my home who whinged about my request that they wearing a mask for 30 minutes while in my home: I had some serious complications after my first covid jab so have had no boosters). The pandemic seems to have taught people nothing. They are back to normal and that's all that counts for them. I'm seething. Please excuse the rant.
I have had M.E and Fibromyalgia for 13 yrs now and have always tried to stay positive but the last 4yrs have been a living hell. I've just turned 59 and feel life is now passing me by. I now live alone and my relationship with my brother has now broken down because he cannot understand why I can't just "push through" my aches and pains ! , no matter how hard I try I cannot convince him just how horrendous and debilitating this illness can be at certain times , it has the ability to completely break you. I used to be very athletic and healthy , now I struggle to get a shower and some days I feel I so ill that I just want to die. I know I'm not alone , there are millions of people out there in the same position as me. Rightly or wrongly I've given up hope on a cure for for these conditions within a timescale which will benefit me greatly , but I'm hopeful that a breakthrough in research will eventually come good for the future and younger generations who suffer from these crippling illnesses. Thank you for this channel and keep up the great work.
Hang in there. I feel in the same boat as you. If family your age hasnt made the effort to understand over the amount of time yoi have been sick then i wouldnt expect that to change. Depression seems to rear its head the longer you have it...or at least in my case I would highly encourage you to find some one to talk too..hope you feel good today!
@@bjarman9507 Thanks for your reply. As you will know through your experience with the illness , some days are better than others and all we can do is take each day as it comes and hope it's not a real bad one. I have been talking to a very old friend of mine lately who has taken a keen interest in my health issues and yes , it is a slight help. Good luck with your battle with this cruel and debilitating illness. I know that there are so many of us in the same boat fighting this thing every day. I must admit I'm not an overly religious man but I do pray for a medical cure on a regular basis , as I suspect we all secretly do !
I am also about to turn 59 and have both like you plus other issues such as slipped discs, cervical arthritis, Raynaud's Syndrome. I feel the same way as you do., everything you said resonates with me. Hang in there my friend. Much love from England.❤
i think the NIH study to be published, possibly later this year, will change this field forever. I just wish they would publish it earlier. They know, they really know.
Glad to hear some good news! The more I research on my own behalf, the more compassion I have for the terribly high number of people (and families) who are losing so much year by year. I imagine us all kind of waving a flag from a prone position as we cry out for some medical enlightenment! And Brain Fog: economic impacts much?! After getting a 2nd higher degree halfway through my career, I scrapped all the plans to level up to my dream job. The hard truth was I had to find something I could still do - something sustainable given my new mental and physical limitations. Brain Fog can be a bully and a beast, and even with a simplified job there's still so many bad days, I actually probably do need to retire. A neuropsych evaluation basically indicated that I can still learn and remember but my processing speed and verbal fluency have just bottomed out. So Ireally am behind and confused much of the time. It wasn't procrastination or depression. The social isolation, self shaming, and stigma of these chronic illnesses is just a huge factor in our ability to move forward with a life that's meaningful to us. Sharing with each other helps! Thanks so much for your work. 👍🏼 I wear a ...⏳Processing... pin to help me laugh through the frustration. 🤪
Thank you very much for these articles. I started taking 1mg of extended release Guanfacine 4 days ago and it has reduced brain fog and, surprisingly, fibromyalgia pain significantly. This is mentioned in the second article you posted. I'm interested in talking to my doctor about this Anyhdrous-Enol Oxaloacetate in the third article.
The international group Open Medicine Foundation has come a long way in researching ME. They say it's a complex, complicated and systemic disease. They have come far enough to test medicines in vitro, and I have hope that we will get some form of treatment within a cople of years. They are really skilled, humble scientists and they give me hope! 🌸
Medicine and research goes exponentially, there will be treatments soon, either through long COVID, the visibility we get now and the possibility to get even more trials and studies. Thanks for the information!
I live in Scotland and there's not alot of help in my area for CFS, I feel I'm left with my tools which are pacing, meds and self care basically. I think other countries are better with research etc. Thank you xxx
Get your CP to check your levels of vitamins and minerals. We tend to eat non-optimally (because designing a diet takes energy) and get too little sun. I’ve had low D, calcium and B12, and doing something about it helped.
@@valentinaruseva7612 yes thyroid replacement helped in mine check out ok to but I've dine testing Dr Sarah myhill and taking dedicated thyroid have you had OCD or ADHD Asperger's ime sure my father has ADHD mother Asperger's all hypermobile that's a clue my son's also got OCD testing for ADHD Asperger's.ive had me since fall 1997 but it's turned more fybromyalgia since I had stress 2016. Do you have much muscle pain?. Git try low glutamate diet how bad is yours at moment and how long
There's nothing to be optimistic about when not one of the dozens of medical staff I encounter have even heard of it. And not one of my drs acknowledges it as a real condition.
Well, you can be optimistic that other Doctors and researchers are working hard to figure this all out. That will eventually force your docs to re evaluate their views.
I’m hypersensitive to all pharmaceuticals, the polio vax as a child paralysed me a month from neck down, almost died. Later in my teens jabs to travel to Africa caused collapse, fever hallucinations & allergic to ALL antibiotics !!! ,
I now regard it as positive that I have a low tolerance level to pharmaceuticals, I’m sure it has aided my recovery that I have had to find more holistic ways to recover.
Thanks so much for doing the work to uncover these very interesting developments, AND for letting us know about it, AND with the links too. Much appreciated!
I happened to stumble upon this video when I saw your other video and it's now 2024 so I'm hoping that they do figure something out soon because there are days when I cannot live with this me /CFS
What was the study that increased/decreased I should say/ the fatigue? I am dying here....14 years....of being sick....need help with the fatigue and the pain and many other things....now have a bunch of autoimmune issues too....
Although this research is promising, I think one of the biggest obstacles to finding a treatment is determining the cause. In long covid, it is known to have been triggered by covid, whereas, with ME/CFS, there are lots of routes to getting ME/CFS. This is why long covid can possibly have a single treatment that works, whereas, for ME/CFS sufferers, different treatments work for different people, as the underlying illness is different, and if you are prescribed the wrong treatment it can have long term negative effects.
People have developed M.E. after surgery, car accidents and head injuries. It's not always post viral or post infectious. But it most commonly occurs after a virus. At least based on the studies I've read.
For me, it's the other way around. From the very first time I heard the sypmtoms of LC patients, I said that it's ME. Research seems to start to point in the same direction.
Honestly, I agree that Covid and ME/CFS have nothing in common. I’ve had both and being very sick with both viruses I don’t see any comparison. I started with infectious mono at 32 yrs old. I was hospitalized for 2 weeks with 105+ temp for over a week which they couldn’t get down normally and I was deathly Ill. I’ve been dealing with this illness which has stolen my life for 50 LONG years. I am 82 😅 5:38 homebound/bedridden and their is NO let up. It’s a horrendous illness😱😱😱
Is there a relationship between ME and fibromyalgia? I have symptoms of both, but maybe I’m mistaking symptoms. I haven’t been able to find satisfactory treatment because the symptoms indicate to many physicians that someone is simply neurotic.
I started trying the Oxaloacetate and there was some promising results. I had to back off of it because I am trying to get some other things balanced so I know for sure it is the oxaloacetate that is providing the improvements (because the cost is not insignificant). I plan to go back on it once I am better balanced with a few other medications.
I got BenaGene. You have to be careful of the dosage because it says 250 mg but it is only 100 mg of oxaloacetate. There might be other brands with a higher percentage of oxaloacetate. The dosages that worked in the studies were pretty high and I wasn’t taking enough to start with but I was still seeing some benefit.
Don’t get me wrong I feel very sorry for people with Long Covid but has it really taken a global pandemic to get any help for people with ME/CFS who have suffered for decades!
A century and a half is more like it. Something very much like ME was described after a flu epidemic in the late 1800`s….
Yesss, this pisses me off to no end! But I try to turn it around, and think about how screwed all those Long Covid patients must feel: ALL of their suffering could've been prevented, if only medical 'science' had listened to us ME patients...
There's currently a health care crisis brewing in my country, for a large part because of so many health care professionals being home, unable to work, with Long Covid... AAARRRGGH! Very f*ckstrating....
However, with so many people out of the running, they're forced to come up with something usefull that will also benefit us. So, that's something, at least.
@@Judith_Remkes I agree with you completely. The long covid patients could also have been helped if health care “professionals “ had taken note of the NEW NICE guidelines and not forced them into CBT and graded exercise which, as any person suffering from ME/CFS will tell you, just makes things worse with Post exertional malaise. It took long enough to get the guidelines updated and yet STILL they are being disregarded! It is an absolute travesty how we have been treated by the NHS in the UK 🇬🇧
@@Judith_Remkes Indeed! You are so right! I feel the same way: LC could have been prevented had we with M.E. been listened to ages ago. It also pissed me off that it took a global pandemic and lockdowns for people to begin to grasp the notion of isolation. Having M.E. the isolation has been one of the most difficult things for me to bear. However, unlike healthy people in isolation, the nature of M.E. is such that you often are too unwell to communicate with others by any means at all. No empathy whatsoever from even those closest to you. Then when they had to endure a few weeks of restrictions all hell broke loose. After all the lectures I'd received over the years (easy to deliver when it's someone else who's suffering) it absolutely made my blood boil. It made me realise just how much pent up anger I had which had been slowly accumulating over the years and it just spilled over. I couldn't bear listen to people whinge about not being able to go to the pub (although I know not everyone found lockdown unbearable for superficial reasons). People were shocked and annoyed with me because I wasn't happy that they finally "got it" (so patronising: like they expected me to give them an award or something which only made me angrier). However, once the pandemic was over we became invisible again to those healthy enough to rejoin society. Now that covid is "over", those who are still clinically vulnerable have once again been shoved to the side and expected to just put up with the selfishness of others (I've had engineers in my home who whinged about my request that they wearing a mask for 30 minutes while in my home: I had some serious complications after my first covid jab so have had no boosters). The pandemic seems to have taught people nothing. They are back to normal and that's all that counts for them. I'm seething. Please excuse the rant.
@@dogcarman yes neurosthenia I was diagnosed with that 1998
Thank you! What is striking is that it took a pandemic to develop any kind of treatment for our diseases!
This is very encouraging! And Very Positive!
Very sad that it took the pandemic to get any sort of research happening but I'm glad it's happening
I have had M.E and Fibromyalgia for 13 yrs now and have always tried to stay positive but the last 4yrs have been a living hell. I've just turned 59 and feel life is now passing me by. I now live alone and my relationship with my brother has now broken down because he cannot understand why I can't just "push through" my aches and pains ! , no matter how hard I try I cannot convince him just how horrendous and debilitating this illness can be at certain times , it has the ability to completely break you. I used to be very athletic and healthy , now I struggle to get a shower and some days I feel I so ill that I just want to die. I know I'm not alone , there are millions of people out there in the same position as me. Rightly or wrongly I've given up hope on a cure for for these conditions within a timescale which will benefit me greatly , but I'm hopeful that a breakthrough in research will eventually come good for the future and younger generations who suffer from these crippling illnesses. Thank you for this channel and keep up the great work.
Hang in there. I feel in the same boat as you. If family your age hasnt made the effort to understand over the amount of time yoi have been sick then i wouldnt expect that to change. Depression seems to rear its head the longer you have it...or at least in my case
I would highly encourage you to find some one to talk too..hope you feel good today!
@@bjarman9507 Thanks for your reply. As you will know through your experience with the illness , some days are better than others and all we can do is take each day as it comes and hope it's not a real bad one. I have been talking to a very old friend of mine lately who has taken a keen interest in my health issues and yes , it is a slight help. Good luck with your battle with this cruel and debilitating illness. I know that there are so many of us in the same boat fighting this thing every day. I must admit I'm not an overly religious man but I do pray for a medical cure on a regular basis , as I suspect we all secretly do !
I am also about to turn 59 and have both like you plus other issues such as slipped discs, cervical arthritis, Raynaud's Syndrome. I feel the same way as you do., everything you said resonates with me. Hang in there my friend. Much love from England.❤
i think the NIH study to be published, possibly later this year, will change this field forever. I just wish they would publish it earlier. They know, they really know.
Been published yet?
Glad to hear some good news! The more I research on my own behalf, the more compassion I have for the terribly high number of people (and families) who are losing so much year by year. I imagine us all kind of waving a flag from a prone position as we cry out for some medical enlightenment!
And Brain Fog: economic impacts much?! After getting a 2nd higher degree halfway through my career, I scrapped all the plans to level up to my dream job. The hard truth was I had to find something I could still do - something sustainable given my new mental and physical limitations. Brain Fog can be a bully and a beast, and even with a simplified job there's still so many bad days, I actually probably do need to retire. A neuropsych evaluation basically indicated that I can still learn and remember but my processing speed and verbal fluency have just bottomed out. So Ireally am behind and confused much of the time. It wasn't procrastination or depression. The social isolation, self shaming, and stigma of these chronic illnesses is just a huge factor in our ability to move forward with a life that's meaningful to us. Sharing with each other helps! Thanks so much for your work. 👍🏼
I wear a ...⏳Processing... pin to help me laugh through the frustration. 🤪
Thank you very much for these articles. I started taking 1mg of extended release Guanfacine 4 days ago and it has reduced brain fog and, surprisingly, fibromyalgia pain significantly. This is mentioned in the second article you posted. I'm interested in talking to my doctor about this Anyhdrous-Enol Oxaloacetate in the third article.
Best of luck! Keep us posted on how it works!
There saying they are the same on TMS Dr schubiner
How is your pain now sure I have ADHD or Asperger's do you have hypomobility
The international group Open Medicine Foundation has come a long way in researching ME.
They say it's a complex, complicated and systemic disease.
They have come far enough to test medicines in vitro, and I have hope that we will get some form of treatment within a cople of years.
They are really skilled, humble scientists and they give me hope! 🌸
I hope so, I've been trying to get someone from OMF for an interview.
YOU always bring the positivity! Thanks for sharing the research. Looking forward to diving in. Cheers!
Hopefully more studies to come!
Medicine and research goes exponentially, there will be treatments soon, either through long COVID, the visibility we get now and the possibility to get even more trials and studies.
Thanks for the information!
I live in Scotland and there's not alot of help in my area for CFS, I feel I'm left with my tools which are pacing, meds and self care basically. I think other countries are better with research etc. Thank you xxx
My father's CFS was thyroid took 12 years to show in TSH.ive got fybro and CFS before u believe but going to have to private full panel thyroid
Get your CP to check your levels of vitamins and minerals. We tend to eat non-optimally (because designing a diet takes energy) and get too little sun. I’ve had low D, calcium and B12, and doing something about it helped.
I'm from Scotland too, our NHS just don't care. In 27 years I had help once by being sent for pacing and that was after 20 years.
@@valentinaruseva7612 yes thyroid replacement helped in mine check out ok to but I've dine testing Dr Sarah myhill and taking dedicated thyroid have you had OCD or ADHD Asperger's ime sure my father has ADHD mother Asperger's all hypermobile that's a clue my son's also got OCD testing for ADHD Asperger's.ive had me since fall 1997 but it's turned more fybromyalgia since I had stress 2016. Do you have much muscle pain?. Git try low glutamate diet how bad is yours at moment and how long
@@valentinaruseva7612 I had breathing problems they told me it was asthma nuts these drs are that seams be ok at moment
At $500 a bottle for 45 days isn’t something I can afford.
Susan-26 year suffering at a high level of symptoms.
🙏🏻💖🙏🏻
You must make the best of each day. What will be, will be.
Difficult to do at times, but I try.
@@fight4me747 I did too much yesterday.
You can’t make the best of days when you’re so severe you’re literally in a coma.
There's nothing to be optimistic about when not one of the dozens of medical staff I encounter have even heard of it. And not one of my drs acknowledges it as a real condition.
Well, you can be optimistic that other Doctors and researchers are working hard to figure this all out. That will eventually force your docs to re evaluate their views.
My new internist: "Ah, right. So, what do the letters 'ME' stand for?" 🤦♀
ME..myalgic encephalomyelitis.
Some of us unfortunately cannot tolerate medications so there’s zero hope for us
I totally get it. I react poorly to a lot of things
I’m hypersensitive to all pharmaceuticals, the polio vax as a child paralysed me a month from neck down, almost died. Later in my teens jabs to travel to Africa caused collapse, fever hallucinations & allergic to ALL antibiotics !!!
,
I now regard it as positive that I have a low tolerance level to pharmaceuticals, I’m sure it has aided my recovery that I have had to find more holistic ways to recover.
Thank you so much for posting these articles. I just forwarded to my doctor. :)
Thanks! And the best to you on your journey!
Thank you! You too!
Thank you for sharing!
Ty so much for sharing 💓 love from London 🇬🇧
You are so welcome
I needed this today, thank you
thanks for sharing :)
My pleasure 😊
Thanks for sharing 🙏
Thanks so much for doing the work to uncover these very interesting developments, AND for letting us know about it, AND with the links too. Much appreciated!
Sometimes people forget that I also have M.E. and making videos can be challenging..I really appreciate comments like these. Thanks.
Thanks for posting. I will definitely look into these.
Thank you for this information!
My pleasure!
Thank you so much for sharing these articles!
I happened to stumble upon this video when I saw your other video and it's now 2024 so I'm hoping that they do figure something out soon because there are days when I cannot live with this me /CFS
Does anyone here with ME/CFS feel better while taking antinflammatory?
Yes it helps alot
My GP recently put me on Low Dose Naltrexone and it’s really helped control inflammation markers. I’ve noticed the difference after a few weeks.
I am 7 years in with CFS
PLEASE if there is a new cure for this keep us updated 🙏 even though i lost my hope 😔
Not a cure, but look into LDN
One of the studies he mentioned was about oxaloacetates, which are available, although they're not cheap.
I’ve been on LDN for a few weeks and I’ve already noticed a difference in my energy levels. I’m also doing this with other things as well.
What was the study that increased/decreased I should say/ the fatigue? I am dying here....14 years....of being sick....need help with the fatigue and the pain and many other things....now have a bunch of autoimmune issues too....
Although this research is promising, I think one of the biggest obstacles to finding a treatment is determining the cause. In long covid, it is known to have been triggered by covid, whereas, with ME/CFS, there are lots of routes to getting ME/CFS. This is why long covid can possibly have a single treatment that works, whereas, for ME/CFS sufferers, different treatments work for different people, as the underlying illness is different, and if you are prescribed the wrong treatment it can have long term negative effects.
I think a lot of people believe ME is a post viral illness. So wether its C-19 or the Flu, hopefully they are treated the same way.
You don't need to find the cause. When you're trapped it doesn't matter how you got there but how to get out.
Just wanted to say thank you for your blogs. You help so many, in so many ways.
Thank you
Anticonvulsants have shown to be useful in decreasing pain or at least turn the volume down .thanks for uploading🤗
I wonder why they used the Fukuda definition of ME.
👍👍👍
Im Deutschland gibt es 0 😢 Hilfe. Habe so viele Symptome und Beschwerden.
I fking hope so
❤❤❤
Post-infectious, not just post-viral. And even that leaves out ME without pathogenic triggers.
People have developed M.E. after surgery, car accidents and head injuries. It's not always post viral or post infectious. But it most commonly occurs after a virus. At least based on the studies I've read.
Honestly I think that Covid and chronic fatigue patients likely have nothing in common. It’s frustrating to see them grouped together
Im curious, why do you think thats likely?
I think you are very wrong!
For me, it's the other way around. From the very first time I heard the sypmtoms of LC patients, I said that it's ME. Research seems to start to point in the same direction.
Honestly, I agree that Covid and ME/CFS have nothing in common. I’ve had both and being very sick with both viruses I don’t see any comparison. I started with infectious mono at 32 yrs old. I was hospitalized for 2 weeks with 105+ temp for over a week which they couldn’t get down normally and I was deathly Ill. I’ve been dealing with this illness which has stolen my life for 50 LONG years. I am 82 😅 5:38 homebound/bedridden and their is NO let up. It’s a horrendous illness😱😱😱
It’s 2024. Any updates?
Is there a relationship between ME and fibromyalgia? I have symptoms of both, but maybe I’m mistaking symptoms. I haven’t been able to find satisfactory treatment because the symptoms indicate to many physicians that someone is simply neurotic.
They are def similar illnesses
did anyone try that: Oxaloacetate?
I started trying the Oxaloacetate and there was some promising results. I had to back off of it because I am trying to get some other things balanced so I know for sure it is the oxaloacetate that is providing the improvements (because the cost is not insignificant). I plan to go back on it once I am better balanced with a few other medications.
What brand did you buy? Awesome to hear people have tried it.
I got BenaGene. You have to be careful of the dosage because it says 250 mg but it is only 100 mg of oxaloacetate. There might be other brands with a higher percentage of oxaloacetate. The dosages that worked in the studies were pretty high and I wasn’t taking enough to start with but I was still seeing some benefit.
In the study they gave participants either 500 or 1000 mg.
Ime diagnosed with both cfs fybromyalgia so how does one no if the muscle pain constant is from the me or fybromyalgia
How long has a flare last for you ?
From days to months.
@@fight4me747 how many months for you ?
Volume is too low
Hello, Have you tried turning up the volume within youtube? Video plays fine on my devices.
@@fight4me747 I find it low as well and everything is fine here with other volumes on other channels.
culprit: microwaves. it can last 2 years before musclepain goes away
Thank you for sharing!