ME/CFS Awareness Thread

This has been circulating in the ME/CFS community and seems to be a wonderful article. We are in desperate need of more real journalism like this that exposes the truth rather than lazily perpetuating the stereotypes and prejudices and misinformation.

Thanks to George Monbiot for this article.

 

On this topic... is it ok to reach out to you for help reaching advocacy/networking with legal resources?

I've been in a dangerous situation the past 2.5 years due to my ME; I've been denied medical care(and transfers!) in every ER I can get to on top of the standard abuses we suffer. I keep thinking a breakthrough is imminent but doctors disappear, referrals get 'lost,' each day my parents call & hear different stories as to why we're not making progress, ...
I've been waiting 5 months on an 'emergency referral' expecting a call any day & really feeling like my only chance of getting needed medical care is getting lawyers involved.
The ones I've found so far can't accommodate unless I can come into their office or voice chat.

 

Hey,
I'm so sorry about what you're going though. I don't have the connections I think you need here, but I'm happy to try to help or at least offer support.

Anyone can message me about ME/CFS or any other chronic illness or disability. Or about whatever you want actually, anyone can message me

 

Then there are still articles like this.

On Long COVID Awareness Day, remember this: Long COVID is fake!

Here’s a post on Twitter today that shows how ridiculous and disgusting this article is.

“Yeah I closed my GP clinic and went into Insolvency, stopped doing the profession I loved and I had studied for 12 years, including specialization, and live below the poverty line now because I am simply lazy”

- Christine Fröhlich

LINK ON TWITTER / X
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Today is Long Covid Awareness Day. Long Covid is a post viral illness where you never recover from COVID even after the initial infection is gone. An estimated 50% of Long Covid patients have ME/CFS from Long Covid (ME/CFS is often triggered by a viral infection like EBV or Covid). And here we have multiple articles today saying it is all fake/ made up. These sick people have lost their entire lives. The lack of compassion necessary to think they are making it up is unbelievable.

here’s a great instagram post explaining Long Covid for the public.

 

My dear friend's ME/CFS started with an ear infection. 7 years later, she is able to work part time and go out with friends from time to time. But she will likely never fully recover.

The hope was that since covid caused the same situation in a lot of people, a lot of research would be done in that area.

Unfortunately that hasn't happened.

 

There's actually much more research being done on long Covid, even if not enough, than there has been on ME/CFS, which in itself a scandal, it should not have taken a pandemic to increase attention to these terrible diseases. If you want more information, follow the work and interviews of Akiko Iwasaki and her many collaborators; or the folks at Penn discovering biochemical signs of the condition. And these are just a few of the groups working on this now. If you want regular updates, listen to (or watch on YouTube) Dr. Daniel Griffin's Clinical Update, which reviews significant new work on long COVID on almost every episode.

 

It's true that there is a lot of new research into Long Covid, but it's mostly not good research, and even the research that is good is very narrow minded. None of it is looking at the big picture or focussing on how to actually improve the quality of life of Long Covid or ME/CFS patients, it's all research designed to get quick publications so that NIH can quote a list of publications from their research initiative and look good to the public. But little bits of data about one tiny mechanism in the body separated from everything else does not translate to anything helpful for patients. And thats' what even the best of this research was. The $1.15 billion accomplished absolutely nothing for actual Long Covid or ME/CFS patients. And the government just gave NIH $500 million more.

The other problem is that they used ALL of the funds to award grants to brand new researchers in the field, while completely ignoring the experienced, often famous ME/CFS researchers who have been studying ME/CFS for decades.

Not all Long Covid patients have ME/CFS, but it is estimated that over 50% do. And there is already a huge wealth of knowledge about ME/CFS from dedicated ME/CFS researchers like my father, Ronald W. Davis PhD. Which was all ignored. So all of the Long Covid research so far, even when they find something, is just re inventing the wheel.

This is one of those situations where the systemic prejudice is blatant. Ron has a lifetime of hundreds of millions of dollars of funded grants from NIH that have led to some of the most significant breakthroughs in genetics in history. Yet when he applies for a grant for ME/CFS, it is denied for ridiculous reasons.

And even with all this money coming in, Ron still cannot get his grants funded by NIH. I believe 1 in 16 of his grants were funded, and the one that was funded was split between 3 researchers.

One of the most horrendous things that has happened is that Ron and a former student of his came up with what would very likely have been a diagnostic test for ME/CFS that was cheap enough to be at all labcorp type labs in the world. So anyone with ME/CFS like symptoms could get tested right away, in the first battery of tests along with hormone levels and vitamin levels.

It was called the "Nano Needle". The grant to continue developing it was turned down 5 years ago. So it would very likely be a commercial test by this time if NIH funded it,

Here's a great article about the Nano Needle and all the controversy around NIH initially funding it but then turning down further funding and then taking credit for it when it was incredibly accurate at identifying ME/CFS patients from healthy controls. All of the research into the Nano Needle relating to ME/CFS was funded by poor patients. And then NIH took credit for it and then still would not fund it.

And having a diagnostic test would change everything. insurance companies would HAVE to cover medical bills and bills for care (I have private insurance and Medicare and neither will cover IV saline bags even though I would die without IV saline because I physically cannot drink water due to a paralyzed stomach, so my family has to pay $14 a bag for saline, which really adds up to a lot of money, and that's just one example), disability benefits would HAVE to be granted (right now patients often have to hire lawyers to get disability benefits when they are too sick to work due to ME/CFS or Long Covid). It would create a spiral effect that would wind up changing everything. Simon Wessely and cohorts could not longer claim it was a psychosomatic illness. Because there would be a medical diagnostic biomarker. Then NIH would have to fund it properly. And so forth.

Anyways, my point is that there is a lot of money being thrown at Long Covid, but it is being wasted terribly while very promising research that would actually benefit patient's quality of life and completely change things is not being funded despite all that money pouring in. NIH simply refuses to fund ME/CFS research, not matter what the cost to anyone. Even if it makes all if their Long Covid research accomplish nothing, they choose that over funding ME/CFS researchers.

I have one finger for NIH

 

This is all down to the insurance companies. Way cheaper to pay for various pills in an attempt to cover up symptoms.

For the nation, it's incredibly expensive having so many people unable to function. But hey, the middle class is picking up the tab so who gives af.

 

And that's another part of ME.. there's little consistency as to what helps us, how long it works for/if its safe to remain on, or how badly trials can go trying something that worked for another patient but caused irreversible harm for you.

I take 7 pills a day(and upto 6 more when trying to get out of long episodes) just to move from .1% normal function to maybe 1%. No one I'm aware of has found anything to bust the brain fog, its all just trying to quicken the bounce back to baseline.

 

Hence the need for more research (obviously). There's little consistency because it's not the correct solution. It's various shots in the dark that help random people for unknown reasons.

That's neither medicine nor science.

 

Here's a newly-published report, focusing on post-infection cases but with more general implications; and some perspectives on it here and here (and a discussion of possible shortcomings, particularly the focus on 'effort preference', here).

Briefly: the results confirmed multiple, measurable and consistent physiological differences between ME/CFS sufferers vs controls, which holds out hope for simple diagnostic testing and differentiation from other conditions; seemed to be consistent with previous ideas on immune system chemical changes influencing the autonomic nervous system and motor cortex; and found consistent differences in these changes between men & women - all of which will hopefully suggest new therapeutic approaches.

 

Oh man, the ME/CFS community is in an uproar about that study, especially when it first came out. I'm glad you concluded what you did from it, and several newspapers did the same. But it has a lot of serious issues, the "effort preference" description for ME/CFS patients having a reduced energy limit is just one of them.

I wrote this Tweet about the term "effort preference"

Describing ME/CFS patients as having "Altered Effort Preference" is such bullshit. Would you feel a jolt of fear if you were pushed next to a cliff with a long drop? Is that "Effort Preference"? Or are you feeling fear of something that would hurt you? It’s that simple.
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I'll have to comment on more of the issues another time. It was supposed to be a landmark study and NIH spent a huge amount of money on it and years working on it, and it amounted to very little. Just more PR from NIH trying to look good while not actually taking action that would find a diagnostic test, treatments and a cure.

My father Ronald W Davis, PhD, came up with what was very likely a diagnostic test called the Nano Needle, it could separate ME/CFS patients from healthy controls with unheard of accuracy and it would have been cheap enough to have at lab corp style labs all around the world so anyone could get a diagnosis in the first weeks or days of symptoms. And then likely avoid exercise or over exertion and maybe recover from it instead of getting locked in the negative feedback loop. Regardless, everything would change with a diagnostic test, I believe I have written about this before in this thread. However, NIH turned down further research on developing the nano needle 5 years ago. If they had funded it, it would probably be a working test today. And yet NIH talks about doing everything they can to figure out ME/CFS. It's all bullshit.