Thanks so much to Beth Pollack and the BHC team for this wonderful presentation. I’m so impressed by Beth’s knowledge of the medical literature and dedication to helping people with IACIs
Thank you for all your research. As a mecfs patient with brain fog, some of it was hard to understand, but i appreciate that these talks are posted on UA-cam to give us hope. Of course I'm hoping your studies lead to treatments and cures SOON! - Signed A patient with ME/CFS that got worse after a vaccine, multiple environmental sensitivities, suspected fobromyalgia & EDS, & a hysterectomy due to ovarian cysts & heavy bleeding
This is fantastic - thank you for reporting on reproductive effects of long covid. Personally, long covid abruptly induced perimenopause at age 42, with menopause at 45. More talks about this! Something I wish would be addressed is nonspecific muscular disease, including use triggered pain and weakness, (if that makes sense).
I got ME from kEDS possibly accelerated/complicated by Lyme disease; I developed CCI/Intracranial Hypertension as the direct driver of symptoms. How often are you seeing EDS outside of the standard h variant? Any idea where I should go for treatment now that I have a clear root cause diagnosed for my ME? Can I seek help in a way that furthers research-I don't mind being documented? Something I've discovered in my research I don't see mentioned: Maladaptation to CCI/EDS. There's a high risk of the muscles becoming hypertrophic or just 'tight' from trying to take over the burden from weak ligaments. In cases without clear vascular compression in the neck 'downriver' problem spots such as the Thoracic Outlet warrant investigation. The muscular maladaptation can impact arteries & veins responsible for maintaining CBF.
Sounds like this is more of what we already have known for years. Why keep doing the same analysis, when what we actually need are drug treatments now. Please, Please, Please start suggesting drug treatments! Start trialing drugs to prevent PEM for a start. Surely you have a hunch. We are utterly tired of hearing the same thing over and over again. Please get into testing some drug therapies. I’ve waited 35 long miserable years and keep seeing this repeated information. I’m sorry this sounds like a rant (it kind of is lol) but I’m so frustrated waiting and suffering daily to be hearing the same things yet again without a single therapeutic drug being suggested. A 15% to 20% gain would be life altering for many of us. And I bet FDA approved drugs exist already that we could use. Surely some people in the world have taken a drug and gone into remission. Look for those people and try on a handful others. If you see improvement, then that’s worth presenting for funding. Because I’m 52 now at the rate you things are going I’ll be dead by the time there’s a treatment, and I’ve donated plenty of money to Bateman Horne and the OMF yet still nothing, nada for us! Sigh 😞
Agree with whole heartedly with you, the omf are doing some drug trials... It's a start. But it's awful watching the time whistle paste at breakneak speed as the research moves at a snails pace isn't it. It's a terrible feeling. This illness is one long torture.
There already have been studies of off-label use of medications, including at the Bateman-Horne Center. For example, BHC recently was recruiting for a Long Covid study of two meds that previously had been studied for me/cfs. They are the antiviral Valacyclovir/Valtrex, which also has been studied alone for me/cfs, as well as in a combo with Celecoxib/Celebrex, a Cox-2 inhibitor NSAID. (As it happens, I have taken both together and Valtrex alone, with just a modest benefit.) Another med that has been studied for me/cfs is Aripiprazole/Abilify, which is FDA approved for psychosis but has other effects. Unfortunately, it’s hard to search for info on such studies, unless you have the name of the specific med. Another issue is that what may sound like something established to a patient is more often simply a theory or speculation that has been repeated. Few doctors are willing to prescribe a meds off label without a formal study published in a medical journal. Even if prescribed, an off-label med is unlikely to be covered by insurance, making the cost unaffordable for many of us. My jnsurance only covered the Valtrex because I also happen to have recurrent oral herpes - it wouldn’t have been covered otherwise.
@@roxyiconoclast There aren't any good quality placebo controlled studies with control groups (gold standard studies basically) for any of those drugs. We need those gold standard drug trials before we can realistically expect doctors to universally prescribe them for patients. Some doctors may do so, but here in the UK for example, that's not going to happen without significant amounts of really high quality research showing safety and efficacy. One tiny bit of research that doesn't come from a super well designed study just doesn't cut it unfortunately.
@@EndersWorlds that’s true, but it also is primarily due to lack of funding. Case studies and pilot studies are essential to obtain funding for clinical trials. Access to off label meds also is severely limited by the resistance of non-specialist doctors to taking Continuing Medical Education programs that discuss existing studies and the results specialist doctors have seen with their me/cfs patients. In the US, at least, most doctors are open to the idea of using meds off label - but in my experience many docs still deny the reality of our illness, so they would refuse to read about clinical trials that do come out. Sadly many reviewers of grant applications and journal articles are in denial, so the lack of big studies isn’t due to lack of interest among researchers. It’s quite the vicious circle. The Open Medicine Foundation and the Bateman-Horne Center are collaborating on more free online CME, which has a better chance now that the CDC info is up to date. I’ve had me/cfs for 32 years, and so I’ve seen all of this. Like many other pwmes who are elderly, I’m likely to pass away before any big clinical trials are funded and published. I’ve been lucky to be a patient at BHC for about 17 years, so I’ve been able to try various off-label meds - but none had dramatic benefits for me. I’ve been a subject in some studies looking at the pathophysiology and sub-groups of me/cfs, so I’m hoping those results will lead somewhere. I also hope that the interest in Long Covid will bear fruit for younger pwmes, especially those who aren’t able to see docs with expertise in our condition.
@@EndersWorldslooks like my previous reply to this comment was deleted, so I’ll just say that the lack of large studies isn’t due to lack of interest from researchers. In the US, funding for science in general is decreasing and what is available tends to go to the researchers with prior track records and illnesses perceived as being “real” and widespread. The continued widespread denial of the reality of me/cfs makes it quite difficult to get funding even for well designed studies, as Ron Davis has vented about before. And, in my experience as a pwme for 32 years, many if not most primary care doctors deny the reality of our illness. So it’s difficult to intervene in that vicious cycle. Luckily, I’ve been a BHC patient and research subject over the past 17 years or so. I’ve tried many of the off label meds, with little or no benefit. So while clinical trials sound appealing, I think more research on the pathophysiology and subgroups of me/cfs is needed before we make much progress with clinical trial funding or effective treatment. Hoping the interest in Long Covid will open more minds, since many LC patients meet me/cfs. But it’s really sad to see people attacking me/cfs researchers, as if they’re missing the obvious - they are not.
Much success and gratitude!
Thanks so much to Beth Pollack and the BHC team for this wonderful presentation. I’m so impressed by Beth’s knowledge of the medical literature and dedication to helping people with IACIs
Thank you for all your research. As a mecfs patient with brain fog, some of it was hard to understand, but i appreciate that these talks are posted on UA-cam to give us hope. Of course I'm hoping your studies lead to treatments and cures SOON!
- Signed
A patient with ME/CFS that got worse after a vaccine, multiple environmental sensitivities, suspected fobromyalgia & EDS, & a hysterectomy due to ovarian cysts & heavy bleeding
This is fantastic - thank you for reporting on reproductive effects of long covid. Personally, long covid abruptly induced perimenopause at age 42, with menopause at 45. More talks about this!
Something I wish would be addressed is nonspecific muscular disease, including use triggered pain and weakness, (if that makes sense).
Thank you all for your ongoing hard work! I definitely think the immune system is compromised during certain times of the menstrual cycle.
I got ME from kEDS possibly accelerated/complicated by Lyme disease; I developed CCI/Intracranial Hypertension as the direct driver of symptoms. How often are you seeing EDS outside of the standard h variant? Any idea where I should go for treatment now that I have a clear root cause diagnosed for my ME? Can I seek help in a way that furthers research-I don't mind being documented?
Something I've discovered in my research I don't see mentioned: Maladaptation to CCI/EDS. There's a high risk of the muscles becoming hypertrophic or just 'tight' from trying to take over the burden from weak ligaments. In cases without clear vascular compression in the neck 'downriver' problem spots such as the Thoracic Outlet warrant investigation. The muscular maladaptation can impact arteries & veins responsible for maintaining CBF.
Sounds like this is more of what we already have known for years. Why keep doing the same analysis, when what we actually need are drug treatments now. Please, Please, Please start suggesting drug treatments! Start trialing drugs to prevent PEM for a start. Surely you have a hunch.
We are utterly tired of hearing the same thing over and over again.
Please get into testing some drug therapies. I’ve waited 35 long miserable years and keep seeing this repeated information. I’m sorry this sounds like a rant (it kind of is lol) but I’m so frustrated waiting and suffering daily to be hearing the same things yet again without a single therapeutic drug being suggested. A 15% to 20% gain would be life altering for many of us. And I bet FDA approved drugs exist already that we could use. Surely some people in the world have taken a drug and gone into remission. Look for those people and try on a handful others. If you see improvement, then that’s worth presenting for funding.
Because I’m 52 now at the rate you things are going I’ll be dead by the time there’s a treatment, and I’ve donated plenty of money to Bateman Horne and the OMF yet still nothing, nada for us! Sigh 😞
Agree with whole heartedly with you, the omf are doing some drug trials... It's a start. But it's awful watching the time whistle paste at breakneak speed as the research moves at a snails pace isn't it. It's a terrible feeling. This illness is one long torture.
There already have been studies of off-label use of medications, including at the Bateman-Horne Center. For example, BHC recently was recruiting for a Long Covid study of two meds that previously had been studied for me/cfs. They are the antiviral Valacyclovir/Valtrex, which also has been studied alone for me/cfs, as well as in a combo with Celecoxib/Celebrex, a Cox-2 inhibitor NSAID. (As it happens, I have taken both together and Valtrex alone, with just a modest benefit.) Another med that has been studied for me/cfs is Aripiprazole/Abilify, which is FDA approved for psychosis but has other effects.
Unfortunately, it’s hard to search for info on such studies, unless you have the name of the specific med. Another issue is that what may sound like something established to a patient is more often simply a theory or speculation that has been repeated. Few doctors are willing to prescribe a meds off label without a formal study published in a medical journal. Even if prescribed, an off-label med is unlikely to be covered by insurance, making the cost unaffordable for many of us. My jnsurance only covered the Valtrex because I also happen to have recurrent oral herpes - it wouldn’t have been covered otherwise.
@@roxyiconoclast There aren't any good quality placebo controlled studies with control groups (gold standard studies basically) for any of those drugs. We need those gold standard drug trials before we can realistically expect doctors to universally prescribe them for patients. Some doctors may do so, but here in the UK for example, that's not going to happen without significant amounts of really high quality research showing safety and efficacy.
One tiny bit of research that doesn't come from a super well designed study just doesn't cut it unfortunately.
@@EndersWorlds that’s true, but it also is primarily due to lack of funding. Case studies and pilot studies are essential to obtain funding for clinical trials.
Access to off label meds also is severely limited by the resistance of non-specialist doctors to taking Continuing Medical Education programs that discuss existing studies and the results specialist doctors have seen with their me/cfs patients. In the US, at least, most doctors are open to the idea of using meds off label - but in my experience many docs still deny the reality of our illness, so they would refuse to read about clinical trials that do come out. Sadly many reviewers of grant applications and journal articles are in denial, so the lack of big studies isn’t due to lack of interest among researchers. It’s quite the vicious circle.
The Open Medicine Foundation and the Bateman-Horne Center are collaborating on more free online CME, which has a better chance now that the CDC info is up to date. I’ve had me/cfs for 32 years, and so I’ve seen all of this. Like many other pwmes who are elderly, I’m likely to pass away before any big clinical trials are funded and published. I’ve been lucky to be a patient at BHC for about 17 years, so I’ve been able to try various off-label meds - but none had dramatic benefits for me. I’ve been a subject in some studies looking at the pathophysiology and sub-groups of me/cfs, so I’m hoping those results will lead somewhere. I also hope that the interest in Long Covid will bear fruit for younger pwmes, especially those who aren’t able to see docs with expertise in our condition.
@@EndersWorldslooks like my previous reply to this comment was deleted, so I’ll just say that the lack of large studies isn’t due to lack of interest from researchers. In the US, funding for science in general is decreasing and what is available tends to go to the researchers with prior track records and illnesses perceived as being “real” and widespread. The continued widespread denial of the reality of me/cfs makes it quite difficult to get funding even for well designed studies, as Ron Davis has vented about before. And, in my experience as a pwme for 32 years, many if not most primary care doctors deny the reality of our illness. So it’s difficult to intervene in that vicious cycle. Luckily, I’ve been a BHC patient and research subject over the past 17 years or so. I’ve tried many of the off label meds, with little or no benefit. So while clinical trials sound appealing, I think more research on the pathophysiology and subgroups of me/cfs is needed before we make much progress with clinical trial funding or effective treatment. Hoping the interest in Long Covid will open more minds, since many LC patients meet me/cfs. But it’s really sad to see people attacking me/cfs researchers, as if they’re missing the obvious - they are not.
Please, please, please could you speak less fast when doing these recordings?
They are talking fast. If you see the gear symbol in the top right, you can slow down the speed to something that you can better understand