New Open Medicine Foundation Video: Ron Davis Reports on "Fast-Tracking" ME/CFS Research

[slysaint]

But lets not get sidetracked (though the concern is valid,

I did not mean it to lessen anything that Ron Davis has done/is doing. I just wish there was some way someone could pull out and scrutinise all those research studies that have been given so much credibility in the past and are still apparently regarded as 'good research'.

 

[Ben H]

Well, we have to be careful to stay accurate. But there is lot's of good stuff in this video, i'm impressed with the tenacity and inventivity of the work.

For sure @Solstice

I did not mean it to lessen anything that Ron Davis has done/is doing. I just wish there was some way someone could pull out and scrutinise all those research studies that have been given so much credibility in the past and are still apparently regarded as 'good research'.

Its fine @slysaint -its a valid point. Crawleys research is (handpicked) trash, we all know that.


B

 

[NexusOwl]

He's looking for a cure for his son after all. Much more important than "being right" is to make things the right way so they find the cure.

 

[Jenny TipsforME]

@NexusOwl it is also important to maintain credibility as this influences people's confidence in donating, so as a knock on how much can get done. We're raising the issue because we want OMF to succeed, not for the sake of it. Also it inadvertently props up the validity of a broad Oxford style definition in the UK, which I'm pretty sure wasn't the intention.

I thought it was an excellent video, until the last bit, but came on here straight after @Ben Howell @Rose49 to flag up

Ron talks about 1 in 50 children having CFS. ,

too

This statistic has validity problems. Ron is right that the sample is unbiased but it's not convincingly picking up just MEcfs. It is tempting to use higher incidence numbers for fundraising, but a lot of people think this figure lacks credibility. Isn't MEcfs more like 1 in 200 people? That is still a lot of people.

I think Leonard Jason is doing a study like this on young people but that hasn't finished yet.

 

[NexusOwl]

Sorry Jenny, I was talking about OP's surprise on Ron Davis not trying to impose the hypothesis they have. I didn't realise you've been discussing on his citation of Crawley!

 

[Janet Dafoe]

https://pediatrics.aappublications.org/content/130/1/e71.long?trendmd-shared=0

basically a lifelong study on fatigue; children
"14 000 expectant mothers were recruited into the study, and the children have been followed up regularly since birth with postal questionnaires for both children and their parents, clinical assessments, and the collection of biological samples"

"When the study children were aged 13 years, their mothers or main carers were sent a questionnaire that included questions on whether their teenager had been feeling tired or lacking in energy over the last month (yes, no); how long the tiredness had lasted (<3 months, 3 to 5 months, 6 months to 5 years, ≥5 years); how many days their teenager had missed school because of tiredness; and whether the tiredness/lack of energy had stopped the teenager taking part in hobbies, sport, or leisure activities (not at all; only a little; quite a lot; a great deal). The questionnaires asked whether the teenager snored (never, sometimes, often); whether the mother thought the fatigue was due to the teenager playing too much sport; and whether the teenager took regular medication"

"Of the 5657 13 year olds with sufficient information to define chronic disabling fatigue, 1995 were tired or lacking in energy in the last month. Of these, the following did not have chronic disabling fatigue: 1284 who were tired for <3 months; 516 who had fatigue but were not disabled by it; 18 whose mothers thought they were fatigued due to playing too much sport; 27 who snored frequently (to exclude sleep apnea); and 33 who had probable depression. There were no teenagers on medication for long-term illnesses that could have caused the fatigue. There were 296 children with missing data on snoring, and it was assumed they did not snore frequently."

"Of 117 13 year olds with chronic disabling fatigue of at least 3 months’ duration, 53 (45.30%) had been affected for more than 6 months and 7 for more than 5 years."

"The main limitation of this study is that definitions of chronic disabling fatigue were based on parental reports of symptoms. The CDC8 criteria require that 4 of 8 additional symptoms are present, whereas the NICE9 criteria require 1 additional symptom. Each set of criteria require physician diagnosis to exclude other conditions that cause fatigue."
"To our knowledge, this is the first study to reveal an association of early life family adversity with chronic disabling fatigue in teenagers. Our results are consistent with studies in adults, which describe an inverse association between CFS/ME and socioeconomic status"

Think the one on 16 year olds was a follow up from this one.

IMO The most likely candidates for ME are the 7 that were ill for more than 5 years and possibly some of the 53 affected for more than 6 months but without any other criteria it's all largely supposition/guesswork.

Shows (again) how this approach is wrong if the study purports to be one on ME or CFS (MEGA) rather than 'chronic disabling fatigue'.

(posted on the opposing mega thread).
My heart sank when he mentioned this study.

He only mentioned it as one estimate of prevalence. He was trying to illustrate how prevalent it might be. He is very aware of problems with diagnostic criteria and with Crawley's "treatment" research!

 

[Christian Godbout]

Great segment when he says that most people who think they know this disease only know the patients that are well enough to move around, but if you get to see the severes, "and there is a large number of them", he says, "they're totally isolated… and they have very little support…it's a horrible disease….it's one of the most horrible diseases I have ever seen".

 

[perrier]

Great segment when he says that most people who think they know this disease only know the patients that are well enough to move around, but if you get to see the severes, "and there is a large number of them", he says, "they're totally isolated… and they have very little support…it's a horrible disease….it's one of the most horrible diseases I have ever seen".

Yes, this was a most moving observation. You rarely hear mention of the Severes. I know only Severes. Thank you Dr Davis.

 

[Navid]

Yes, we are very lucky to have Dr. Davis working on this disease, such a smart, practical, driven man......thanks to the highest spirits for this.

There was a doc. about Warren Buffet on HBO Monday night. He has donated Billions to the Bill and Melinda Gates Foundation. They are working on many of the world's greatest health problems. It seems like a good idea for a Dr. from Silicon Valley reach out to the man who practically put a computer in every home for money to solve one of the world's most neglected and damaging diseases.

Has OMF reached out to the Gates Foundation? I think if the Gates heard Dr. Davis speak and heard/saw Whitney's story (along with the rest of our stories) they might be moved to donate to the research.
@Ben Howell

 

[Murph]

Has OMI reached out to the Gates Foundation? I think if the Gates heard Dr. Davis speak and heard/saw Whitney's story (along with the rest of our stories) they might be moved to donate to the research.
@Ben Howell

I thought this was a good idea so I went to the Gates Foundation site. Sadly it says this...

--

Examples of areas the foundation does not fund:

• Direct donations or grants to individuals
• Projects addressing health problems in developed countries
• Political campaigns and legislative lobbying efforts
• Building or capital campaigns
• Projects that exclusively serve religious purposes

--

The thing about ME/CFS is it is seemingly more prevalent closer to the poles, and among anglo-celtic populations. So its prevalence in less developed countries is not necessarily high. {EDIT: THE ABOVE STATEMENT IS DISPUTED! data is limted however multiple sclerosis is more prevalent closer to the poles.}

A shame. But malaria and TB in the 3rd world are very clear short-run value for money on a dollar per life saved basis. So it is difficult to argue with!

Still, doesn't matter, there's lots of other funds that have lots of money!

 

[Snow Leopard]

The thing about ME/CFS is it is seemingly more prevalent closer to the poles, and among anglo-celtic populations. So its prevalence in less developed countries is not necessarily high.

That is not true. The prevalence is likely related to the risk factors - primarily infections, so is actually more prevalent in developing countries that are closer to the equator and have more circulating infectious diseases. Studies in Africa, South America, Hong Kong etc estimate higher prevalence than in Anglo countries.

ME/CFS was notably absent from the worldwide disease burden studies, suggesting a strong need for higher quality epidemiological studies in other countries to estimate worldwide prevalence and burden - this is something the Gates Foundation could and should fund.

Yes and her 2016 paper on those kids as 16 year olds published in Pediatrics ended up in mainstream media in US.

Newsweek's headline was "Chronic fatigue syndrome affects 1 in 50 teens"

http://www.newsweek.com/chronic-fatigue-syndrome-affects-1-50-teens-419365

The Crawley study based on the Avon Longitudinal Study of Parents and Children study isn't that bad - the major issue is due to money - they didn't have the money to do proper clinical screening of diagnosis. Hence why the two papers refer to "chronic disabling fatigue" rather than a specific CFS criteria - of course journalists don't know the difference and therefore misreport it.

 

[Hutan]

That is not true. The prevalence is likely related to the risk factors - primarily infections, so is actually more prevalent in developing countries that are closer to the equator and have more circulating infectious diseases. Studies in Africa, South America, Hong Kong etc estimate higher prevalence than in Anglo countries.

ME/CFS was notably absent from the worldwide disease burden studies, suggesting a strong need for higher quality epidemiological studies in other countries to estimate worldwide prevalence and burden - this is something the Gates Foundation could and should fund.

I agree.

There is the aftermath of the ebola epidemic where survivors have lost their families, have had their possessions and homes burned by neighbours fearful of the disease, face stigma and social isolation and, on top of all that, many are now experiencing ME-like symptoms and struggle to or can not work. This is in countries where there is little in the way of social welfare. Studies aiming to understand and treat ebola survivors' post-infectious conditions are very much needed.

I have worked in some regions in developing countries where there is a notable degree of lethargy in communities, which could of course be due to a whole range of medical, nutrition and socioeconomic issues, but probably post-infectious fatigue is a factor. A number of my colleagues' family members in these countries have what seems to be ME. ME could easily be widespread and having a major negative impact on communities in developing countries - we just don't know.

Re Crawley

One Crawley study I have read closely based on the longitudinal study and some data from specialist clinics, to do with CFS and obesity, was very bad.
http://forums.phoenixrising.me/inde...lescents-with-chronic-fatigue-syndrome.46969/
Obesity in adolescents with chronic fatigue syndrome: an observational study

Much of the data (not just the odd data point here and there but lots) was missing and so they had filled up the gaps using all sorts of contorted assumptions. I'd have to find my post on it to say more. But I was staggered at the poor quality of the work - it was that paper that convinced me that Crawley is not a competent researcher.

I don't think journalists should take all the blame for muddling 'chronic disabling fatigue' and 'chronic fatigue syndrome'. I'm sure they were helped to be confused. eg in the obesity study:

Results: Adolescents who had attended specialist CFS/ME services had a higher prevalence of obesity (age 13 years: 9.28%; age 16 years: 16.43%) compared with both adolescents classified as CFS/ME in ALSPAC <Avon Longitudinal Study of Parents And Children> (age 13 years: 3.72%; age 16 years: 5.46%) and those non-CFS in ALSPAC (age 13 years: 4.18%; age 16 years: 4.46%).

Edited to add (sorry for late edit) : - here's a bit from my post on the obesity study. You'll see that the majority of the ALSPAC samples (60%) didn't have information on fatigue. Crawley et al filled in the gaps based on things like 'family adversity'.

There's something a bit weird with the imputation of missing data. If you look at the supplementary material on imputation, it appears that,
for specialist services data at both 13 and 16, only around 15% of the 1680 data points had BMI information;
for ALSPAC data at both 13 and 16, only around 40% of the data points had CFS data and only about 40% had BMI information.

The supplementary material says missing data was imputed using auxiliary variables due to, among other things, 'their strong hypothesised association with CFS/ME'. Auxiliary variables used included
Family Adversity Index
Life Difficulties
School Absences in Year 11
Academic attainment
Anxiety and depression measures

 

[TiredSam]

Its fine @slysaint -its a valid point. Crawleys research is (handpicked) trash, we all know that

Great video and very encouraging to hear about Ron's work, like everyone else I'm very grateful every time we are given new hope by his brilliant research.

Don't want to go on about it, but it has just occured to me that the next time the Bristol child-catcher faces criticism she'll now be able to say "Well my studies are being cited by a team including three nobel laureates at the cutting edge of scientific research into ME" - she'll find some way to twist it to gain credibility and imply that she's rubbing shoulders with real scientists. Better not to give her such a gift, to hear a scientist of Ron's stature acknowledging her existence in any context was a disappointment.

But that small niggle aside, wow , isn't the OMF great .

 

[A.B.]

We need a billionaire to fund the OMF. We patients are impoverished by illness and the NIH is making only small steps forward. I'm sure there are billionaires looking for worthwhile causes to support. All we need is a few years of generously funded high quality research to lay the foundations for a larger NIH funded research program.

 

[Emma]

Absolutely wonderful! Super encouraging! I'm overwhelmed with deep gratitude and admiration... at a loss for words. I can't understand why NIH isn't throwing all their money at him, already!

There's so much to love about this video, about Dr Davis and his team, their work. I'm amazed by his beyond-brilliant mind, his huge heart, the emotion in his voice, not to mention his superhero level of dedication... I could go on and on for days..!

However, I'm afraid I have to agree with some of the comments that have been made by others already. Anything that contributes to the conflation of ME (CCC, ICC) and other kinds of long-lasting fatigue (without the cardinal symptoms of ME) worries me.

All communication matters. Being consistently clear about the difference between the disease(s) ME and idiopathic chronic fatigue is hugely important, at all times, in my opinion.

Most of all, my heart is simply brimming over with immense gratitude. I'm especially thankful for the focus on severely ill people.

I'm eagerly looking forward to the upcoming webinar @Ben Howell mentioned, can't wait!

Wishing the whole Dr Davis' team the very best of luck! It's an honor to be one of your supporters.

Much much love!

 

[AndyPR]

Interesting, the video seems to have been taken down from YouTube and the post on the OMF FB page seems to have gone as well. I really hope it is so they can edit it and take out the mention of Crawley's study. No, she isn't named but, as others have said, she would find out eventually and we would then never hear the last of it "the OMF quoted my work, so I don't know what issue the patient population has with it" sort of thing.

I have the greatest admiration for what the OMF are doing, and I support them financially every month, but removal of that quote would be something that I'd really support.

 

[mango]

Maybe it would be a good idea to make this thread Members Only?

 

[BurnA]

My opinion is, it's his video, he gets to decide what he wants to say. He knows what he is doing.

Crawley et al, will be insignificant as a result of Ron Davis' work. The big picture is what we need to look at.

@Ben Howell and all involved, really appreciate this and would like to think they could become a regular feature.

 

[TiredSam]

Maybe it would be a good idea to make this thread Members Only?

Wouldn't make much difference. Their spies are everywhere.

 

[AndyPR]

My opinion is, it's his video, he gets to decide what he wants to say. He knows what he is doing.

Sure, it's his video. And if he wants to be seen to be supporting Crawley's poor studies then that's up to him as well.

Crawley et al, will be insignificant as a result of Ron Davis' work. The big picture is what we need to look at.

They will be insignificant only after a prolonged battle to get rid of them. I am thinking of the big picture, the less reinforcement of their position that they receive now, the sooner that they will be gone following the biomedical breakthroughs, whenever they occur.