Freakonomics episode ft. Ron Davis, Anthony Komaroff, Vicky Whittemore

[Dakota15]

https://freakonomics.com/podcast/could-long-covid-help-treat-other-chronic-illnesses/

Sharing this episode published last Friday of Freakonomics, titled "Could Long Covid Help Treat Other Chronic Illnesses?

Chronic fatigue syndrome looks remarkably similar to Long Covid, but has been ignored by the medical community. Could patients finally get some answers to their debilitating illness?

This episode features ME patient Winston Blick (creator of ME/CFS quote page https://twitter.com/mecfsquotes), Dr. Ron Davis, Dr. Anthony Komaroff and Dr. Vicky Whittemore from the NINDS.

Overall, the episode does a strong job in my opinion discussing about ME/CFS itself & the challenges with research funding.

However, I was frustrated and disappointed with Vicky Whittemore's comments on ME/CFS funding.

For instance she stated that "You may have a disease that there is a huge disease burden, but if there’s not a research community out there, NIH doesn’t designate a certain dollar amount..."

This excuse simply does not hold up to scrutiny. Not only is it an incredibly frustrating response to my community’s decades long cries for help, as of course it is predictably difficult to attract researchers to a field for which there is almost no dedicated funding, but the respected researchers at prestigious institutions who have dedicated their careers to helping us despite meager funding opportunities continue to report that their grant applications are being denied. Dr. Ron Davis at Stanford says that he's only had 1 out of 24 applications funded.

I have emailed Dr. Whittemore and know many in the community have done the same. I hope more will follow suit. Below is a quick template shared by a pwME to help copy/paste/send.

Her e-mail is whittemorevr@mail.nih.gov

https://twitter.com/i/web/status/1548972329895608320

 

[Breagjam]

Email sent!

 

[Rufous McKinney]

For instance she stated that "You may have a disease that there is a huge disease burden, but if there’s not a research community out there, NIH doesn’t designate a certain dollar amount..."

This excuse simply does not hold up to scrutiny

one must be able to accurately identify a problem in order to address it and correct the situation.

If there is funding out there for this burden, people will respond.

Actually having funding is a big deal. But we should not lose sight of the stigma we hear associated with people who want to work on this issue. (you'll never have a decent career if you study THAT CFS stuff)

But they are figuring it out, slowly. The shift away from infectious diseases to chronic diseases forgot infectious chronic diseases....

 

[Pyrrhus]

Thanks for sharing @Dakota15 !

And great work!

 

[BrightCandle]

I was fuming listening to this last week. The funding isn't the only bit of misinformation she spews unfortunately. There are some little lies like that ME/CFS didn't exist before 1980s and a few others that are clearly and blatantly untrue. There is a lot of NIH misinformation in this.

 

[hapl808]

I was fuming listening to this last week.

I'm painfully trying to make my way through this podcast. Have to stop regularly because it makes me too angry. "Some people take as much as a year to get diagnosed." Umm, I've seen 30+ doctors over 20+ years and I don't think I've been officially diagnosed by any of them. Partially because most 'traditional' doctors don't really believe in ME/CFS. And personally, I don't think we even know if we're looking at one disease or 20 diseases.

 

[BrightCandle]

10 years and counting. I heard a MEAssociation doctor say that it regularly took a year and I couldn't believe they were this out of touch. But they are they genuinely have no clue most of can be hundreds of appointments in with no diagnosis, no treatments and a doctor who wont even see us anymore. The level of disconnect is dramatic.

 

[hapl808]

The level of disconnect is dramatic.

They also don't understand that there is so much gaslighting for chronic illnesses, that an ME/CFS diagnosis can also be an albatross. If that's in your chart, good luck getting help on any comorbidity. It's equivalent to a stamp that says, "Crackpot Patient - just nod and hope they leave quickly. Stop returning their calls if possible."

 

[lenora]

Hello everyone.....I disagree that most doctors don't take us seriously. I think many do....it's just an impossible situation if we don't have confirmation of the illness itself.

Earlier this summer I read a book by an M.D. a surgeon who is also a victim of ME. It took him 8 years to get a diagnosis. Now people (other doctors) believed him, but there wasn't an automatic code that could be used to accurately describe our illness.

I know that my neurologist spends hours of his own time reading as much as possible about the illness and attending conferences. It's a highly frustrating illness for patients, researchers and doctors. I know because I've had many different types of doctors, but in all honesty, at least most have been kind. I'm sorry, really sorry, that you've met the other type.

I truly wish each of you well..more than that, I hope you'll find that one kind and interested M.D. Yours, L.

 

[hapl808]

I know that my neurologist spends hours of his own time reading as much as possible about the illness and attending conferences. It's a highly frustrating illness for patients, researchers and doctors. I know because I've had many different types of doctors, but in all honesty, at least most have been kind. I'm sorry, really sorry, that you've met the other type.

I think you have been luckier than most. I have seen three neurologists and one neuromuscular specialist. I present fairly reasonably, so no one totally brushes me off. One honestly said he could put a number on my reduction in function with enough testing, but he had no idea how to help these kinds of illnesses. He was probably the smartest. One was very dismissive and didn't know what I wanted him to do (refused to discuss neurotransmitter function - basically said it wasn't his field). One recommended a CFS/fibro specialist who was the worst doctor I've ever seen. One did a decent amount of testing and basically said she didn't think I had muscular dystrophy or ALS, but really had no idea beyond that.

Other than the one CFS/fibro guy, I think they all meant well. None of them spent an hour on CFS, let alone multiple hours. The same goes for my rheumatologists, ID specialists (the most dismissive), etc. One of my naturopaths spent the most time on it, but pretty much every recommendation she gave me was from Teitelbaum. That said, she was willing to RX some treatments I found, so she was good until she suddenly stopped practicing.

I've only had one terrible doctor (he damaged my health permanently), but I've had 30 doctors who are just a product of the system. They can't afford to spend hours reading harebrained theories about a disease the insurance companies won't approve treatment for anyways. Outside of the usual, I considered Dr Jon Kaiser and a few other CFS specialists, but whenever I spoke to a patient in a similar situation, they never seemed to have the wonderful results those doctors claim are the norm.

 

[BrightCandle]

There are three definining parts of how the NHS has treated me that go beyond just lack of knowledge and were actively and intentionally malicious:

1)I saw Dr Chalder one of the big problem people in the NHS that has been torturing patients and publishing faked data and she definitely tried to do me harm. The time I saw her the new guidance was still in development and she was still pushing CBT and GET like nothing was changing or any of the studies had proved her nonsense wrong. She asked zero questions about my symptoms, the entire thing was about my childhood and other psycho nonsense.

2) My GP dismissed my condition and refused to diagnose or look into my condition at all and would not grant me appointments. That as far as I can tell is illegal in the NHS but the complaint turned into a giant cover up by the complaints group.

3) My GP caused the cancellation of my specialist appointments including a surgery to remove my wisdom teeth that cause constant gum infections.

That is systemic prejudice and its actively harmful and its still happening. My new GP forgets every time we talk about my condition, 5 times in a row like they have no knowledge whatsoever. That is not normal and it points to complete dismissal of my medical condition. So when people say its just benign lack of knowledge I disagree, this is actively willfull intentional actions to deny me medical access and do me harm.