"ME/CFS Funding Worsens As NIH Maintains Status Quo"

FMMM1 said:
I was surprised by Maureen Hanson's [Center for Enervating Neuroimmune Disease] key note address at the 2019 Symposium [https://www.omf.ngo/2019/10/02/symposium-talks-now-available/] - i.e. surprised by the fact that Maureen pointed the finger at an immune cause. I think Maureen's son has ME? I'd put my faith in Maureen's view (albeit based on limited knowledge - we don't know the cause of ME/no biomarker etc.) rather than second year medical students.

There's a proposal to run a GWAS study for ME; I think GWAS studies have helped to establish the cause of other diseases @Simon M @Andy know more about the GWAS study than I do.
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Why? She’s a plant biologist specializing in mitochondria, of course she thinks it is metabolic.

Has she taken gross anatomy? Phys? Neuroanatomy? Endocrinology? histopathology? I assume so.

It would be like me publishing papers in botany - I could maybe i had to take plant biochem - wouldn’t be very innovative though.
 
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Jonathan Edwards said:
What I don't think happens is that infections trigger autoimmunity. That is a very old chestnut that has never had any basis, except perhaps in one or two very specific situations and even there I am sceptical.
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Apologies if this question is a bit off-topic. Not too long before I got ME, I went on a hiking holiday in the Peak District. On the last day I felt 'fluey' and my neck got extremely stiff. The next day I woke up and could not move - every single joint in my body had seized up.

This was very abnormal because I was a fit and active 22 year-old with no history of joint problems. I eventually managed to shuffle painfully to the doctor, who said it was an autoimmune reaction to a virus causing polyarthropathy.

I recovered fully after a month or so, then a couple of years later got glandular fever and have been disabled ever since.

I always wondered whether I was prone to abnormal immune responses, but am of course aware that these could have been two completely unrelated incidents.

Do you think acute autoimmune episodes like the polyarthropathy that I had are spontaneously generated by the immune system, rather than in response to a pathogen?

I have a long history of getting sick after I exercise intensely, but never took note of the pattern at the time. I wouldn't get ME symptoms, but every time I went on a hiking holiday or two-to-three day martial arts training event, I would get sick. Usually with a chest infection, but sometimes other things like the polyarthropathy.

I have wondered whether an abnormal immune response to exercise has been present for a long time before the glandular fever triggered it into actual ME, but that is of course just a pondering...
 
Ron/Maureen agreed that you couldn't recommend going into ME research.
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One solution to this for early career researchers interested in going in to ME research might be that they specialise in a field that can contribute to ME research but which also covers other diseases which get grant funding. When funding is hard to come by for ME studies, they could have projects ongoing in related areas, and also share knowledge and resources to support ME studies when they do get funding for an ME study. This is a more stable career approach and while it would mean they aren't working on ME 100% of the time, what they learn from studying other diseases might be of use for ME research.

I am thinking e.g. at my university there is a department which studies metabolic and molecular physiology and exercise physiology. They do studies on deconditioning, ageing, etc. But they have a lot of exercise and muscle physiology knowledge and useful equipment (e.g. for CPETS) that would be useful for ME research.

So someone interested in exercise physiology of ME could apply for a PhD or Post-doc in a department like that, and then try to educate others in the department and apply for grants to get an ME study off the ground, which might have better chances of success due to the resources and physiological expertise that the department has.

Likewise, we also have a big clinical neuroimmunology department. They mostly study MS, but someone could try to get a position in a research group like that and as an early career researcher would learn a lot of skills and knowledge that could be of relevance to ME research, then try to educate others in the department and get funding to start doing ME research alongside the MS research, using the same labs and equipment etc.

Of course this depends on the researcher already being motivated to study ME. But I think this could be one way to get biomedical ME research happening in related fields that are already established and have knowledge and resources to contribute.
 
beverlyhills said:
Why? She’s a plant biologist specializing in mitochondria, of course she thinks it is metabolic.

Has she taken gross anatomy? Phys? Neuroanatomy? Endocrinology? histopathology? I assume so.

It would be like me publishing papers in botany - I could maybe i had to take plant biochem - wouldn’t be very innovative though.
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We're speculating i.e. since we do not have biomarkers for ME. I think the barriers in identifying biomarkers etc. are due to the low level of funding - not the scientists.

There are a wide range of scientists/doctors researching ME e.g. look at the OMF group. So I'm not personally concerned about the scientists - more the very low level of public funding.
 
FMMM1 said:
There are a wide range of scientists/doctors researching ME e.g. look at the OMF group. So I'm not personally concerned about the scientists - more the very low level of public funding.
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I think that the work that OMF is going is a great step forward, but there are not even close to the number of researchers that we need looking at this disease. Suppose OMF does its best work, but comes up empty handed? This is certainly not uncommon in science. We need dozens of research groups with new ideas and approaches to this disease. We have no idea where breakthroughs may come from.

As much as I respect Dr. Davis, we can’t put all of the responsibility - or, for that matter, all of the funding - into OMF. We need an army of good researchers attacking this disease from different directions. And I don’t mean to be grim, but we really need young researchers entering the field. The average age of both our clinicians and our researchers is pretty old. Again, I’m talking about the US - don’t know about anywhere else.
 
Wilhelmina Jenkins said:
I think that the work that OMF is going is a great step forward, but there are not even close to the number of researchers that we need looking at this disease. Suppose OMF does its best work, but comes up empty handed? This is certainly not uncommon in science. We need dozens of research groups with new ideas and approaches to this disease. We have no idea where breakthroughs may come from.

As much as I respect Dr. Davis, we can’t put all of the responsibility - or, for that matter, all of the funding - into OMF. We need an army of good researchers attacking this disease from different directions. And I don’t mean to be grim, but we really need young researchers entering the field. The average age of both our clinicians and our researchers is pretty old. Again, I’m talking about the US - don’t know about anywhere else.
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Wow; your comment about the rest of the world stands out.

There are some notable researchers in the UK and the EU; however, in general they don't get public funding. Believe it or not the US looks (relatively) better! I agree with your comments about growing the field and also regarding Ron.
 
I wasn't sure where to put this as it doesn't deserve its own thread but it was interesting and pertinent, as usual because it was written by someone with personal experience. It's a discussion over medical research funding and how diseases like ME fall through the cracks. From 2018 but like pretty much anything written in the lest 30 years it's every bit as relevant today.
“Which medical research should be receive more funding” is a hugely important question, with hundreds of *billions* of dollars spent on medical research yearly. It’s also one that is not always approached in a rational and evidence-based way, which is understandable, as most people think about this question when they or their loved ones ends up suffering from a particular disease.

As an EA, it’s somewhat ironic that I started thinking about medical research because someone close to me became disabled from a horrible illness, but researching this illness gave me lots of ideas that could be more widely applicable to cause prioritisation within medical research. I’ll use this illness as a case study, using the ITN framework.
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Here I’ll use the name myalgic encephalomyelitis, or ME. It’s an illness characterised by extreme fatigue, which in the most severe cases can lead to not being able to move the body at all, beyond basic functions like breating. It is commonly accompanied by pain. There is no cure, very few medicine to manage symptoms, and the cause is not understood at all. Researchers have observed immunological and neurological abnormalities, but that’s about it. Tens of millions of people worldwide fit the diagnosis, with about a quarter of them being homebound or even unable to leave their bed.

The history of controversy is a nasty one. It is now known that it’s a disease that affects the immune system, and diseases like that disproportionally affect women, for reasons still unknown. This is a well-established, empirical fact. But in the past, the condescending, patriarchal society would label this “mass hysteria”. The revised name became “Chronic Fatigue Syndrome”, which is a bit better, but still trivialises this crippling disease (“I’m always tired too”). This history continues in different forms, with some insurance companies and governmental bodies still labelling the disease as a “psycho-social disorder”. This is an obvious cop-out for a disease that has virtually no objective lab tests to confirm it, but which is very real nonetheless.
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https://forum.effectivealtruism.org/posts/CbYgMbEPDWgafPfyL/on-funding-medical-research
 
Jonathan Edwards said:
What I don't think happens is that infections trigger autoimmunity. That is a very old chestnut that has never had any basis, except perhaps in one or two very specific situations and even there I am sceptical.
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Which cases are you referring to? I'd suggest the are a possible cause (meaning that there are other triggers) Guillain Barre Syndrome? Rheumatic Fever? Acute disseminated encephalomyelitis? Immune thrombocytopenia? Sydenham's chorea?

A key point I'd like to make is that there are hypothetical models where infections can trigger autoimmune syndromes without requiring molecular mimicry.
 
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