Prof Stephen Holgate @AfME conference "we are bathing in ignorance"

[Simon]

From the Action for ME 2013 Research Conference & AGM

Stephen Holgate was the keynote speaker and, as usual, was immensely interesting:

he gave a brief overview of where we have been in the field of M.E./CFS research up to now, and how little contribution it has made to patient benefit. There is hardly an organ of the body not affected by this disease, and yet there is still an enormous lack of knowledge, disagreement over diagnostics, and perceptions of M.E./CFS vary enormously “We are bathing in a bath of ignorance,” said Prof Holgate. “Times have got to change.”

He talked about how modern medicine handles simple diseaeses well, but:

Non-communicable, chronic inflammatory and degenerative conditions, plus the public health crisis caused by increasingly toxic lifestyles, are enormously difficult and expensive to manage and research

He goes on to argue that new technology's capabilities new affordability (the cost of sequencing the human genome has fallen from $23 million 20 years ago [edit: $3 billion!] to under $1,000 now) will help provide the solution. (read more about this A Dozen Different Diseases? Stephen Holgate Calls for Radical Change in ME/CFS Research).

It has led to what is called P4 medicine: personalised, predictive, preventative and participatory.

I do like the sound of particpatory.

Last year AfME had Julia Newton as its key speaker, this year Stephen Holgate - both pursuing a biomedical research agenda, which I find very encouraging.

 

[WillowJ]

I like the sound of most of that. thanks for info.

 

[Waverunner]

He goes on to argue that new technology's capabilities new affordability (the cost of sequencing the human genome has fallen from $23 million 20 years ago to under $1,000 now) will help provide the solution. (read more about this A Dozen Different Diseases? Stephen Holgate Calls for Radical Change in ME/CFS Research).

Prof. Holgate made some very nice statements and I fully agree with him. Breast cancer is not one disease but at least 10-20 diseases and the same is true for most other diseases. We need to find distinct molecular subgroups of CFS and treat them as such. In 1 to 2 years I see it as the duty of every PWC who can afford it, to sequence his/her full genome, share it anonymously with the community and work towards finding the cause of his/her disease as well as the treatment. Time will be one of the most important factors in analyzing genome data but it will be necessary to solve this disease. So the more PWCs work on this, the sooner we should find a solution.

I just wanna correct one thing. The first human genome was finished in 2000 (at least a draft of it) and the final version in 2003. It didn't cost $23 million but at least over $3 billion dollars. So if you wanted to sequence a human genome 20 years ago, it probably cost around 23 billion dollars and not 23 million.

 

[Firestormm]

Offering real hope, he showed how the establishment of a respiratory disease research collaborative – on which the CMRC, launched in April, is based – led to a five-fold increase in research funding from the Medical Research Council. Prof Holgate firmly believes that the same, and more, is possible with the CMRC.

“By coming together as a group,” he concluded, “we can genuinely make a difference for people with M.E./CFS.”

One can only hope

I shall look forward to listening to Stephen myself in due course:

Prof Holgate's presentation will be available to watch on our YouTube channel soon.

It seems to have been a very inspirational talk.

Thanks Simon for raising it here. I wouldn't have known about it otherwise

 

[Sean]

"we are bathing in ignorance"

Ain't that the truth.

 

[Gemini]

In 1 to 2 years I see it as the duty of every PWC who can afford it, to sequence his/her full genome, share it anonymously with the community and work towards finding the cause of his/her disease as well as the treatment. Time will be one of the most important factors in analyzing genome data but it will be necessary to solve this disease. So the more PWCs work on this, the sooner we should find a solution.

Personal Genome Project--UK

"Efforts to put individual genome sequences and accompanying personal health information online in a freely accessible database just got a boost in the United Kingdom. On 6 November, Stephan Beck from University College London and his colleagues announced the establishment of a British Personal Genome Project (PGP-UK), which will recruit volunteers to provide DNA and health data with no restrictions on their use.
PGP-UK plans to sequence 50 British residents, age 18 or older, in its first year and ultimately hopes to enroll 100,000, Beck says. Some 450 people have already expressed interest, and the group has secured a year’s worth of funding and in-kind sequencing services. "

www.personalgenomes.org.uk

this link may be behind a paywall: http://scim.ag/persgens

 

[alex3619]

Heterogeneity is a huge problem with us. So is a possible spectrum problem. One disease can present differently in people if they have different expressed or inherited genetics, different comorbid conditions, or different lifestyles. However I think that proper genetic screening could detect this if the cohorts are large enough, and the analysis good enough ... its not just about testing, its about how those results are analyzed. If a large dataset were published though, then many groups could analyze that data, even us.

 

[Esther12]

"we are bathing in ignorance"
Ain't that the truth.

Yet we have plenty of 'experts' who've been making money for decades from claiming that they can walk on water.

 

[Iquitos]

"Non-communicable, chronic inflammatory and degenerative conditions, plus the public health crisis caused by increasingly toxic lifestyles, are enormously difficult and expensive to manage and research."

"Toxic lifestyles", whatever that means, do not account for the decades of history behind this illness. I lived a very clean lifestyle up to and including the period when I got this illness, 31 years ago.

And is he sure it's non-communicable? Is he eliminating the outbreaks from consideration? There were, at the least, dozens of people sick on the day and hours I was in the ER with the "killer flu", that started my experience and which I never fully recovered from. How does that equate to "toxic lifestyle" and/or "non-communicable"?

IMO, a couple of red flags.

 

[Bob]

"Non-communicable, chronic inflammatory and degenerative conditions, plus the public health crisis caused by increasingly toxic lifestyles, are enormously difficult and expensive to manage and research."

"Toxic lifestyles", whatever that means, do not account for the decades of history behind this illness. I lived a very clean lifestyle up to and including the period when I got this illness, 31 years ago.

My own take was that he was just making a general observation about challenging health issues.
By talking about toxic life-styles, I think he's referring to the burden on health that is created by alcohol and tobacco and obesity. And I'm pretty sure that he was not equating ME to any of these references, other than it being a challenging and expensive health issue that needs sorting.
He's said some very helpful things about ME in the past.

 

[peggy-sue]

Forgetting the toxicity of hydrogenated fats, fructose syrup, aspartame and food colourings, lead from petrol fumes and the fumes themselves, gazillions of superfluous cleaning products (all you need is plain soap, sodium bicarbonate, vinegar a mild detergent and some water), pesticides, weedkillers which abound in public places and fields, and the antibiotics pumped into animals... ?

we are all exposed to these in our "lifestyles", whether we like it or not

 

[Bob]

And it has been hypothesised (Byron Hyde) that some types of ME have been triggered by exposure to chemicals such as sheep dips etc. I think the Countess Mar (an ME advocate in the UK's House of Lords) became ill after exposure to sheep dip.

 

[Bob]

...all you need is plain soap, sodium bicarbonate, vinegar a mild detergent and some water...

Try telling my mum that! (And she grew up in the 1930's!)

 

[peggy-sue]

I like the old-fashioned stuff - I'm just an old-fashioned sort of girl.

And NOTHING can clean windows quicker or better than a wipe with dilute washing up liquid (detergent) finished off with a splash of vinegar in a bowl of water and dried/polished with scrunched up newspaper.

Up here in Scotland, we have soft water.
The supermarkets are chock-a-bloc with limescale removing cleaning things.

We don't have limescale here.

Folk who are using these are just polluting the water and the environment for no good reason.

For limescaley water use vinegar.
For soft water, use sodium bicarbonate.

 

[Firestormm]

@peggy-sue Urgh! Don't yer tea taste foul with vinegar in it?

 

[SOC]

Yet we have plenty of 'experts' who've been making money for decades from claiming that they can walk on water.

To whom are you referring? There are some excellent ME/CFS experts who are doing a lot to improve their patients' quality of life without claiming to walk on water or becoming obscenely wealthy.

If you're calling Wessley an 'expert', I'm inclined to agree with you.

 

[peggy-sue]

Russ, all tea tastes foul! Perfumey water.
Vinegar rinses out easily.

SOC, I would suspect that in the states and a few odd other places, yes, there are some real experts.

In other places, we have wesseley, lightening-your-wallet processes, mickey mouse therapy and any number of other dodgy alternative therapies getting more credence (and a lot of money) than real science.

 

[barbican1]

"Toxic lifestyles", whatever that means, do not account for the decades of history behind this illness. I lived a very clean lifestyle up to and including the period when I got this illness, 31 years ago.

.

toxic could mean a stressful lifestyle

 

[Iquitos]

toxic could mean a stressful lifestyle

I did not get ME/CFS because of "stress" or "lifestyle." I think blaming the disease on those things is a copout.

I don't see any indication that the Tahoe/Incline Village outbreak was due to stress or lifestyle, especially for the girls' basketball team.

The "killer flu" and projectile vomiting I and a waiting room full of similar patients experienced the week I got this was not due to stress or lifestyle for me and I doubt it was them either.

First the establishment tells me I'm weak in the genes or personality and can't take normal stress. When they find out I was not a shrinking violet for the 34 years I lived a vigorous life before I got sick, they change their tune and tell me I was an "over acheiver." Can't have it both ways. And both ways are irrelevant.

 

[barbican1]

I did not get ME/CFS because of "stress" or "lifestyle." I think blaming the disease on those things is a copout.

how are you certain that stress may not have health consequences?