USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

[Andy]

A thread for general NIH news and discussion
See also: USA: NIH funding for ME/CFS research


Medpage today: "NIH Striving to Avoid False Hope in Chronic Fatigue"

Shame about the title, yet again.

BETHESDA, Md. -- The National Institutes of Health is trying hard to bring real hope -- not false hope -- to patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), NIH director Francis Collins, MD, PhD, said during an exclusive interview with MedPage Today.

"Five years ago ... there was this big excitement that there was a retrovirus that was turning up in people with CFS, and initially it didn't appear to be in people who were unaffected," Collins said Friday during an interview at the NIH main campus, at which a communications staff member was present. "It was a funny retrovirus that had only been seen in cultured cells in the lab, and maybe in mice, [and it was] called XMRV."

"It was really exciting because it was a retrovirus, and we have drugs for retroviruses! It got published in Science to great excitement, but then almost immediately other researchers looking at very similar patients said, 'We don't see this' or maybe 'We see it in people who don't have the disease,'" he continued. "We mounted a careful multi-site study funded by NIH with blinded samples to try to see [whether] this [held] up and sadly, it did not. That was such a blow to a community of suffering people who thought, 'Finally, they're on to something.'"

Collins said he has been "greatly moved and troubled" by the stories of CFS patients, "especially when many of those stories start with people who are highly active, and many of them fairly athletic, and some illness that sounds viral, like a really bad flu, hits them, but they don't get better ... Many of them are unable to resume normal activities and end up bedridden for months or years."

https://www.medpagetoday.com/publichealthpolicy/publichealth/70529

 

[Jonathan Edwards]

It is disappointing that someone at NIH thinks a good way to present aims for ME/CFS needs a reference to xmrv.

I consider Barts' Hospital to be my alma mater. The motto was 'Whatsoever thy hand findeth to do, do it with thy might'. That is to say there is no need to apologise for all the mess. You just get on with things.


Edit: the spellchecker screwed up seven words in this - what a world we live in.

 

[Allele]

It's not even an apology. It's the worst kind of face-saving and teflon-for-responsibilty word salad.
Collins has not been our friend historically.

Although the medical community has been criticized for not taking ME/CFS seriously, "it's very hard for me to see how [that criticism is] fair when you hear stories of people who've gone rather suddenly from a full life to bedridden status -- something dramatic happened there," said Collins.

What does this bs even mean? the first part of the clause has nothing at all to do with the second. Criticism of the medical establishment's dismissiveness isn't fair because the patients are actually really sick? Wtf

He added, however, that "there are problems [in that] CFS has become such a blurry diagnosis, that in there amongst hundreds of thousands or millions of people who carry that diagnosis is a whole heterogeneous group and there may be individuals ... who have something else entirely or even people who are suffering from depression and are therefore feeling fatigue for that [reason]. I think that's added to the difficulty that the medical care system has had coming to grips with this as a real disease that has a desperate need for new treatments."

And whose fault is it that CFS is such a blurry diagnosis? Looking at you, NIH and CDC.

I couldn't even read the rest

 

[Allele]

P.S.Does anyone have archived the contents of the framed poster that was on CDC's walls for years maligning CFS patients?
THAT is what we've been up against, NOT false hope.

Eurrrgghhh so many bad words wanting to come out the ends of my fingers right now.

 

[Esther12]

What does this bs even mean?

I wonder if the interviewer wasn't particularly familiar with the topic, so things ended up a bit scrambled and confused? The CFS part of the interview seems a bit of a mess to me.

At the same time - there are still positive things about it, and for the impression given to a lay reader, it's much better than a lot of the things we were getting a few years ago. Having the head of the NIH raise CFS during an interview, and talking about taking it seriously, is a good thing.

 

[Samuel]

is it true that, after all this time, there are only 2 confirmed case subjects for the clinical center trial?

 

[MErmaid]

Shame about the title, yet again.

https://www.medpagetoday.com/publichealthpolicy/publichealth/70529

This only confirms, at least to me, that it’s going to be patient led initiates which will ultimately lead us to finding quicker answers.

 

[MErmaid]

is it true that, after all this time, there are only 2 confirmed case subjects for the clinical center trial?

You mean the NIH intramural study? If so, then I am sorry to report they are actively recruiting. I was in contact with them recently about being a volunteer.

Just by accident, I was browsing thru the clinical trials web page, looking for any ME studies. That’s when I saw the NIH entry, which is what promoted me to contact them. Prior to this, I had no idea they needed more PwME.

https://clinicaltrials.gov/ct2/show/NCT02669212?cond=Chronic+fatigue&rank=1

 

[ahimsa]

Although the medical community has been criticized for not taking ME/CFS seriously, "it's very hard for me to see how [that criticism is] fair when you hear stories of people who've gone rather suddenly from a full life to bedridden status -- something dramatic happened there," said Collins.

This sentence is where I got lost.

It seems like non sequitur. Criticism of the medical community not taking this illness seriously enough is unfair because the patients had such a dramatic drop in their ability to function?

That would seem like a reason that doctors/researchers should take this illness seriously, not an excuse for ignoring the illness.

They might have many different explanations for the drop but that's different than not taking it seriously.

In the next paragraph Collins talks about problems with diagnostic criteria but that is a different thing and doesn't seem to follow from the sentence I quoted. Also, as mentioned above, this is partly due to NOT TAKING THIS ILLNESS SERIOUSLY. If you're convinced it's all mass hysteria or depression then why bother listening to the patient or doing research?

So, am I reading this completely wrong? Help me out.

(edited a few times to try to get my thoughts in order.... hope it makes sense now)

 

[Joh]

Twitter users can also comment here:

 

[Allele]

I wonder if the interviewer wasn't particularly familiar with the topic, so things ended up a bit scrambled and confused? The CFS part of the interview seems a bit of a mess to me.

At the same time - there are still positive things about it, and for the impression given to a lay reader, it's much better than a lot of the things we were getting a few years ago. Having the head of the NIH raise CFS during an interview, and talking about taking it seriously, is a good thing.

I totally appreciate the spirit of giving people the benefit of the doubt, and room to change.
Collins, though, will gain that from me when he takes some kind of meaningful action, rather than simply making half-baked implications of care. This has been going on so long that I can only trust he will do something when he actually does it.

 

[Kalliope]

So, am I reading this completely wrong? Help me out.

I assumed a word was dropped out and that the sentence was supposed to be:

it's very hard for me to see how that criticism is not fair when you hear stories of people who've gone rather suddenly from a full life to bedridden status -- something dramatic happened there

 

[ahimsa]

I assumed a word was dropped out and that the sentence was supposed to be:

it's very hard for me to see how that criticism is not fair when you hear stories of people who've gone rather suddenly from a full life to bedridden status -- something dramatic happened there

Possibly, but then why does that sentence start with although? The word "although" makes it seem (to me) like the reporter is trying to show how Collins' statement is an argument against criticism.

Here's the full sentence again:

Although the medical community has been criticized for not taking ME/CFS seriously, "it's very hard for me to see how [that criticism is] fair when you hear stories of people who've gone rather suddenly from a full life to bedridden status -- something dramatic happened there," said Collins.

Putting the word NOT in that sentence doesn't make it clearer for me. It still seems very confusing.

I can't tell if it's bad writing or whether I've just got such bad brain fog that I can't hold clauses in my head long enough to make sense of long sentences.

 

[Samuel]

i doubt being on record mentioning m.e. in the press every once in a while is going to answer the inevitable pointed questions from congress about francis's lack of urgency.

@MErmaid i was trying to confirm my recollection that they have gathered approximately 15 confirmed controls and 2 confirmed cases. are those controls going to be used for non-m.e. purposes?

 

[Allele]

You're right, @ahimsa, the sentence makes no sense. Both passages you quoted also stuck in my craw.
He's saying things that sound like something, but aren't really anything. This appears to be something he specializes in.

The false hope I experienced, right after he became NIH director, is well-represented by his performance here:

 

[Kalliope]

I can't tell if it's bad writing or whether I've just got such bad brain fog that I can't hold clauses in my head long enough to make sense of long sentences.

Bad writing, for sure!

 

[MErmaid]

@MErmaid i was trying to confirm my recollection that they have gathered approximately 15 confirmed controls and 2 confirmed cases. are those controls going to be used for non-m.e. purposes?

I don’t know, but you can email them with your question.

 

[petrichor]

This sentence is where I got lost.

It seems like non sequitur. Criticism of the medical community not taking this illness seriously enough is unfair because the patients had such a dramatic drop in their ability to function?

That would seem like a reason that doctors/researchers should take this illness seriously, not an excuse for ignoring the illness.

They might have many different explanations for the drop but that's different than not taking it seriously.

In the next paragraph Collins talks about problems with diagnostic criteria but that is a different thing and doesn't seem to follow from the sentence I quoted. Also, as mentioned above, this is partly due to NOT TAKING THIS ILLNESS SERIOUSLY. If you're convinced it's all mass hysteria or depression then why bother listening to the patient or doing research?

So, am I reading this completely wrong? Help me out.

(edited a few times to try to get my thoughts in order.... hope it makes sense now)

I think when he says "It's hard to see how [that criticism is fair] when you hear stories", despite the wording, he really means the criticism of the medical community is fair.

Because the article goes on to say "however", and he explains how the blurry diagnosis means the medical system finds it harder to come to grips with it. So, that must mean the first point (about the criticism) is contrary to the second point - which is that it's a little fair for the medical system to not get it - which means in the first part (about the criticism), he actually seems to be saying the criticism of the medical community not taking the disease seriously is actually fair.

The "although" might refer to how the section about the blurry diagnosis is a bit contrary to the "the medical community has been criticised for not taking ME/CFS seriously" line. (Sorry, I find this hard to explain well).

So, although he talks about the blurry diagnosis (in my opinion, it isn't really such a blurry diagnosis), he does seem to say that the criticism of the medical community not taking CFS seriously is fair. (according to my dissection) I think the confusingness is probably more the writer's fault than his.

 

[Forbin]

I'll take a stab at it...

What's in the article:

Although the medical community has been criticized for not taking ME/CFS seriously, "it's very hard for me to see how [that criticism is] fair when you hear stories of people who've gone rather suddenly from a full life to bedridden status -- something dramatic happened there," said Collins.

What was probably said:

Although the medical community has been criticized for not taking ME/CFS seriously, "it's very hard for me to see how it's not fair when you hear stories of people who've gone rather suddenly from a full life to bedridden status -- something dramatic happened there," said Collins.

What probably should have been written:

The medical community has been criticized for not taking ME/CFS seriously, but Dr. Collins thinks that such criticism is probably fair, noting that "when you hear stories of people who've gone rather suddenly from a full life to bedridden status -- something dramatic happened there."

He added, however, that CFS has become a "blurry diagnosis" that can capture patients suffering from fatigue due to other conditions such as depression. "I think that's added to the difficulty that the medical care system has had coming to grips with this as a real disease that has a desperate need for new treatments."

 

[Allele]

I just want to add it's been eight years since Francis Collins was all rockstar with his pals in the video above singing "The Times They Are A Changin," about a year after he became head of NIH in 2009. Where was the urgency about the blurry diagnosis, the lack of funding, the dramatic things that were happening to millions of people?

This is why I am feeling less than generous today towards him. I'm done with the words, we need to see results. Glad NIH has finally decided to do research, but this is NINE years later.

And I thought I moved in geological time.