Researcher Interactions Science for ME written Q&A with Prof Chris Ponting

[TiredSam]

The Royal College of Psychiatry have got a definition - they actually say on their website that MUS is physical symptoms that are not due to a physical illness in the body

From their blurb:

They can be called “medically unexplained symptoms”, because they are not due to a physical illness in the body.

The arrogance is off the scale - how do they know a symptom is not due to a physical illness in the body? Because their current state of knowledge of the body is complete, and cannot be improved upon? Because there's nothing left to learn about the body?

 

[Cinders66]

I Apologise for sounding totally negative in my responses it's just this positive , vague spin, perhaps it's genuine for newbie prof Chris who has a , conveniently for the MRC, recent starting point in all this - without recognition of what has been our reality of suffering and their inaction. Without that it will be difficult to take long timers with them with any enthusiasm, if they have any interest in that.

My concern is as always time. I dislike how the CMRC seems to revolve around a yearly time frame for news.
The 3 priorities, how long will it take to get a report, set up a platform, decide priorities then put in the money then wait for applicants, then wait for research. Jonathan Edwards can draw up ten reasonable priorities in five minutes, MRC prefer to take years. Yes it's good to have patient involvement but CMRC could have been seeking views via charities or some other way this year. If the CMRC was peopled by people on the same page as patients, having a PAG to draw them to a fair standard is less necessary.

Watching Chris at the Scottish parliament I was impressed and grateful, I'm grateful for his new research involvement but as patients we aren't walking wounded waiting for final lift off, we are some, barely surviving waiting for the search effort to start searching. I think the page here
https://s4me.info/threads/how-to-create-good-quality-research-proposals.4703/

is good so that as a community we have our own models and suggestions. I don't want infinite money I want fair money, and fair money and good effort is a lot now invested immediately with high level resources too to get it all well organised and get good progress in ME in 5-10 years, not 30, as Jen brea said..

 

[Sasha]

newbie prof Chris who has a , conveniently for the MRC, recent starting point in all this - without recognition of what has been our reality of suffering and their inaction.

Chris is a very good, long-time friend of our @SimonM, who has been very ill for many years, so I think it very likely that Simon has told him all about the problems.

 

[Barry]

Thank you @Chris Ponting for your thoughtful answers and @Andy for organising this Q&A.

As we all know CMRC has been pretty useless, if not a block on progress up until recently.

I take heart from the fact that @Chris Ponting is doing his best to turn it around, and particularly take note of this part of his answer to question 2:



It seems to reasonable to give @Chris Ponting, and the other good scientists on the CMRC committee, a chance to make good on that ambition.

I think it especially heartening that @Chris Ponting has volunteered a time frame range, which procrastinators rarely do.

 

[Barry]

Urgh couldn’t bear to read that pile of crap but made myself do it.

I also found the responses generally quite diplomatic and very different to other Q&A threads. I guess since we had a lot of questions asking why the CMRC was so rubbish we would only get this back?

Thanks to @Andy and @Chris Ponting for the time taken. I’ll be looking carefully for a sea change in the next 6-12 months

Diplomacy is sometimes essential to effecting sea change

 

[Barry]

thanks @Andy. Good to hear that Chris Ponting thinks the classification is unhelpful. I suspect and hope he is using this language to be professional and polite. The Royal College of Psychiatry have got a definition - they actually say on their website that MUS is physical symptoms that are not due to a physical illness in the body

But I think there is a clue here: "The Royal College of Psychiatry have got a definition". A definition that many would discount purely based on the source of that definition. It's an attempt to define something by the absence of other conditions, which is not really a true definition at all surely. @Chris Ponting has effectively said he discounts that as a definition, by saying his understanding is that there is no definition.

 

[Wonko]

Fair money?

A quick google, and back of a fag packet maths, a comparison with research spending for other conditions, suggests that in the UK alone we are owed at least £586 million in funding for research, with an additional £19.5 million per year going forward (assuming prevailance is 0.3%).

That's just in the UK - if the rest of the world chipped in what they should have, but haven't, spent into M.E. research we could probably get a £2-3 trillion research program going next week, admittedly mainly funding how to make pigs fly.

I'm not sure fair, or even close to fair, will ever be a factor, well I am sure....it won't.

 

[chrisb]

Diplomacy is sometimes essential to effecting sea change

I thought Canute had refuted that hypothesis.

 

[arewenearlythereyet]

is good so that as a community we have our own models and suggestions. I don't want infinite money I want fair money, and fair money and good effort is a lot now invested immediately with high level resources too to get it all well organised and get good progress in ME in 5-10 years, not 30, as Jen brea said..

I understand your frustration I think we all feel this. I do worry though that we do need to be realistic in terms of time frame. We all want quantifiable good quality research rather than these 10 perople studies with self reported outcomes and crappy methodology. This unfortunately takes time. I am hopefull but I’m not expecting anything of significance for at least 10 years given that we are at the start and we are hardly doing much on a global scale ...in some ways we are at the beginning or where MS was in the 1960’s. We do have better methods and information since then but we are still at the beginning.

So realistically if we had loads of people working on this across the world pooling info and replicating each other’s work with clinical trials on proposed treatments this is going to take at least 10 years ? And that’s if we find some treatments. To say it can be done in 5 years when we have so little resource doing anything and with the complexity of the disease/condition is a little unrealistic.

I think it’s wrong of researchers and people in advocacy to give false hope (it feels cruel to me).

I’m sorry to sound a bit doom and gloom but it annoys me when people are deliberately misleading under the guise of advocacy. I no longer read the output from OMF since the false hope stuff there pisses me off so much. Im now just going to read published papers.

What I do agree with MEAction though is that we should keep lobbying for fairer research funding and to keep the pressure up. I wouldn’t believe everything they state though since a lot of it is a negotiation opener. It’s more realistic to translate their 5-10 years to 10-20 years.

Hopefully someone will get a breakthrough and find the needle in the haystack and I will gladly eat my words if that happens.

 

[Barry]

I thought Canute had refuted that hypothesis.

He clearly needed a heavy dose of CBT - Canute Belief Transmogrification.

 

[Cinders66]

I understand your frustration I think we all feel this. I do worry though that we do need to be realistic in terms of time frame. We all want quantifiable good quality research rather than these 10 perople studies with self reported outcomes and crappy methodology. This unfortunately takes time. I am hopefull but I’m not expecting anything of significance for at least 10 years given that we are at the start and we are hardly doing much on a global scale ...in some ways we are at the beginning or where MS was in the 1960’s. We do have better methods and information since then but we are still at the beginning.

So realistically if we had loads of people working on this across the world pooling info and replicating each other’s work with clinical trials on proposed treatments this is going to take at least 10 years ? And that’s if we find some treatments. To say it can be done in 5 years when we have so little resource doing anything and with the complexity of the disease/condition is a little unrealistic.

I think it’s wrong of researchers and people in advocacy to give false hope (it feels cruel to me).

I’m sorry to sound a bit doom and gloom but it annoys me when people are deliberately misleading under the guise of advocacy. I no longer read the output from OMF since the false hope stuff there pisses me off so much. Im now just going to read published papers.

What I do agree with MEAction though is that we should keep lobbying for fairer research funding and to keep the pressure up. I wouldn’t believe everything they state though since a lot of it is a negotiation opener. It’s more realistic to translate their 5-10 years to 10-20 years.

Hopefully someone will get a breakthrough and find the needle in the haystack and I will gladly eat my words if that happens.

I think it depends what's found eg Newton is already in a minor way, trialing a diabetes drug that seems to help with some of the energy in the cell. Davies thinks the metabolomic issues might be treatable if they can get more info. If the Japanese PET scan is positive for inflammation we might benefit from the drugs already being tried on schizophrenia for the same issue. I'm not saying a cure but some forms of treatment for some people. I would hope much better scientific understanding is there too. Speed to me is largely determined by effort and resources, although I take your point that some of the biggies in illness still have a way to go even after years dedicated. Severe MS is hard to treat partly because of reversing scarring I think. It depends where are main issues lie in us perhaps, driving factors etc. I do get frustrated when people comment elsewhere that they hope a cure is found soon which sounds as hopelessly naive as I used to be.

 

[Sunshine3]

I understand your frustration I think we all feel this. I do worry though that we do need to be realistic in terms of time frame. We all want quantifiable good quality research rather than these 10 perople studies with self reported outcomes and crappy methodology. This unfortunately takes time. I am hopefull but I’m not expecting anything of significance for at least 10 years given that we are at the start and we are hardly doing much on a global scale ...in some ways we are at the beginning or where MS was in the 1960’s. We do have better methods and information since then but we are still at the beginning.

So realistically if we had loads of people working on this across the world pooling info and replicating each other’s work with clinical trials on proposed treatments this is going to take at least 10 years ? And that’s if we find some treatments. To say it can be done in 5 years when we have so little resource doing anything and with the complexity of the disease/condition is a little unrealistic.

I think it’s wrong of researchers and people in advocacy to give false hope (it feels cruel to me).

I’m sorry to sound a bit doom and gloom but it annoys me when people are deliberately misleading under the guise of advocacy. I no longer read the output from OMF since the false hope stuff there pisses me off so much. Im now just going to read published papers.

What I do agree with MEAction though is that we should keep lobbying for fairer research funding and to keep the pressure up. I wouldn’t believe everything they state though since a lot of it is a negotiation opener. It’s more realistic to translate their 5-10 years to 10-20 years.

Hopefully someone will get a breakthrough and find the needle in the haystack and I will gladly eat my words if that happens.

Ah jeez you are really hitting a nerve with me....I have felt that a bit about OMF but still, I hope to God we will have some treatments within 10 years. The one thing that gives me some hope is Nancy Klimas....she has possibly found a way of resetting homeostasis in Gulf War Illness. She thinks she may be able to reset ME also....but then we need funding for trials. Also, @arewenearlythereyet do OMF believe their own positivity? I wonder about that, maybe they do.

 

[Luther Blissett]

From their blurb:

They can be called “medically unexplained symptoms”, because they are not due to a physical illness in the body.

The arrogance is off the scale - how do they know a symptom is not due to a physical illness in the body? Because their current state of knowledge of the body is complete, and cannot be improved upon? Because there's nothing left to learn about the body?

I don't think they realise that that definition rules out MUS being a mental illness? It cannot be an illness in the brain, because that would be physical.

 

[Hoopoe]

I’m sorry to sound a bit doom and gloom but it annoys me when people are deliberately misleading under the guise of advocacy. I no longer read the output from OMF since the false hope stuff there pisses me off so much.

A metabolic trap, potentially curable with a simple and brief therapy? Sounds too good to be true. They really are hyping their work too much.

 

[MEMarge]

My favoured acronym is still YUMS: Yet to be Understood Medical Symptoms.

So many "psychomatic" illnesses have become biological as understanding has improved. Epilepsy, gut ulcers, endometriosis...
When will they ever learn.....?

 

[arewenearlythereyet]

do OMF believe their own positivity? I wonder about that, maybe they do.

I do wonder this as well. I think if I’m being charitable, part of this is putting a brave face on (like we all do from time to time).
It is difficult to tell.

I wish they would publish more and promise less.

 

[Sunshine3]

A metabolic trap, potentially curable with a simple and brief therapy? Sounds too good to be true. They really are hyping their work too much.

I think it sounds too 'out there' but I don't think Dr.Davis is hyping anything, he is too solid for that. He believes they could be onto something but isn't promising anything. He has talked before about reaching dead ends and then having to start over as being a natural part of the scientific process.

 

[Simone]

I think it’s wrong of researchers and people in advocacy to give false hope (it feels cruel to me).

Ugh, that’s my pet peeve too. It bothers me so much when some researchers spin their results.

 

[Woolie]

I am very worried about the Edwards-Harrison contingent, and feel strongly that research needs to start with the periphery, and only progress to the brain once we have something more to go on. Else anything that's found could potentially be misused as a justification for sending PwMEs back into thought-correction or behaviour-correction approaches.

But I don't want to bang on about it too much lest it undermine the other research efforts the coalition are proposing.

What do others think? What is the best way to manage this predicament?

 

[Hutan]

I am very worried about the Edwards-Harrison contingent, and feel strongly that research needs to start with the periphery, and only progress to the brain once we have something more to go on.

Regarding the brain, I would like to see the Japanese inflammation studies replicated, but I too am worried that functional MRI's could be used to 'prove' pretty much anything at all. Having seen how easily people can believe that standing in a circle and shouting 'Stop!' is a useful therapy for people with ME, I have no doubt whatsoever that some people will believe a story proclaimed by scientists with pictures from a machine that goes 'ping' that happens to coincide with their pre-conceived model involving some version of hysteria.

I think those of us who can should try to understand more about the dangers of studies with functional MRIs so that we are ready.

But I don't want to bang on about it too much

So, @Woolie, I think you should bang on about it because you know what you are talking about and it's important.

I think we should watch out for the involvement of Crawley and her ilk in any big genetic study too.

I'm pleased that the CMRC is heading in a better direction, I'm pleased that more intelligent and less self-serving people are gaining power in the organisation. I'm very grateful for people like Chris Ponting who genuinely want to find real answers. It may all turn out wonderfully well. But, there's a better chance of that if we are informed watchers and commentators.