Notes from Healthunlocked + do ppt
https://healthunlocked.com/theibsnetwork/posts/150519349/in-the-middle-of-it?responses=150587054
https://healthunlocked.com/theibsnetwork/posts/150519349/in-the-middle-of-it?responses=150587054
xjrs in reply to XDjames4 months ago
Wow. You are preaching to the converted. One of the next things on my list to add to my website is how much wasteful, repeated research there is regarding IBS. For example, multiple countries with studies into FODMAPs, when there are already centres of excellence on this. You probably know more than me, but as I understand it, the problem with research, is it’s organisation and management. Grants are made available and scientists apply for the money based on what they want to study, but no one is driving the research from above i.e. ‘IBS’ is the problem statement, x person has accountability for solving that problem, let’s hire all the scientists and multi-disciplinary teams that we need to crack it, let’s use individuals as the guinea pigs and look in depth into their physiology, microbiology, micro-chemistry etc. and find some commonality and split IBS into sub-groups (or a combination of sub-groups). Let’s really understand what is going on at a micro level, the very first step in a chain reaction that causes symptoms and whether that first step in that reaction can be returned to a normal response.
XDjames in reply to xjrs4 months ago
Yes, researchers compete for funding in their little area and if they can grow a team and launch their researchers to support the cause and work together (rather than fighting among themselves) a specific area can become a major research theme. The funders I know tend to identify themes that they want to grow (or shrink) and there is steer on this from a panel of researchers. So you try to show how your research fits in with one of these areas. So support to grow a research area could be (in the UK) tend to be first bottom up then top down. In some countries (e.g. Singapore) it’s more like top down drive in areas where talent can be bought in (e.g. Dolly the sheep) to make a big impact in a sexy new and ultimately financially rewarding research area. I don’t know how NIHR/MRC work I know folk who know and do this multi-(or rather inter-) disciplinary stuff in a different area, with patient participation groups and will ask them. So far all I can see on MRC/NIHR are amitryptiline and CBT, but UK Biobank -the mother of all longitudinal studies with PPGs- shows some more fruitful directions.
xjrs in reply to XDjames4 months ago
Yes. It would be interesting to understand how the UK works. Thanks.
With researchers picking their own work, it’s a bit like setting up a company and letting your staff pick and choose what they want to do each day, which would be unheard of, highly unprofitable, unfruitful and without direction. There should be a goal (solve IBS) and management is needed to bring skills together (the researchers) to solve the problem to a conclusion (with targets etc to ensure value for money). What I learned from management courses is that detailed oriented skilled workers should be left to do what they do best (the detailed work of research) with others doing all the coordination, bringing different people together, tracking progress, setting goals, creating new goals based on results to conclude a topic and solving problems between teams to ensure no blockages to reach the end point. Otherwise it’s a bit like having sheep running around a field all day. No wonder there has been very little progress regarding IBS over the decades, since no one is driving the ship. After all much of funding comes from the tax payer and should be working towards solving real life problems (to a conclusion) for sufferers and only that. Not, oh, I’ll try this or that, which ends up with concluding ‘more research is needed’ but no one ensures that that takes place, until the next research team has the mind to look at it (which could be years later).
XDjames in reply to xjrs4 months ago
Not sure how much you know but the majority of research in any discipline/topic at least in the UK is driven by academics, wherever possible collaborating with other stakeholders (because they get more brownie points and deliver greater impact, as well as having more fun -fun is a big motivator).
Universities pride themselves on the quality of their research and there is a QR component (quality of research which counts publications and tries to quantify real world impact -again more brownie points according to lives saved, £zillions generated, new jobs etc).
This is a large chunk alongside student FTEs (bums on seats -overseas ones are better, never mind the quality feel the width) and very generous overheads on research funding from a range of sources. These sources include UKRI (MRC), NIHR, EU and charities.
Universities are (badly run!) businesses. In the end while they prioritise teaching (rule #1: don’t f**k up, rule #2 it’s diminishing returns, it’s really hard to get promoted to top levels just for teaching so do it professionally but don’t kill yourself doing it ), the route to the top is actually through research and competing for what’s out there. There are even income quotas for research according to level – usually not enforced but sometimes they are, even with suicidal consequences. So it’s up to academics to find ways to extract money from funders in a way that grows their career. And hopefully they derive a lot of professional satisfaction doing it along with the miseries of huge investments of time for a failed proposal. There are many agencies that direct research from above and tell their researchers what to do but I find relatively few in the UK, they have largely been privatised and so compete directly with academic institutions.
BHF, Parkinson’s, Cancer Research etc. support research but I think Guts Charity etc. are small beer. There’s very little media excitement about IBS or other such conditions unfortunately. Everyone wants to save the planet and defeat cancer (worthy causes but there is other stuff to do).
xjrs in reply to XDjames4 months ago
XDjames , thanks for explaining. From what you are saying it is very much bottom up. The statement: “So it’s up to academics to find ways to extract money from funders in a way that grows their career” – is very telling. This is very much about individual needs and a gravy train, so no wonder there is very little in the way of direction or overall progress.
I know what you mean about lack of media excitement regarding IBS.
There are so many incurable diseases that must be placing a massive burden on the NHS, resulting in work sick days or rendering people ‘economically inactive’ – that’s just the bottom line, but there is also a huge amount of suffering involved. Actions towards reducing suffering should be at the forefront of everything that we do. It’s pretty shocking that there seems to be no one in government coming up with a strategy to tackle them and drive that strategy forwards, so that funding isn’t just about advancing someone’s career, brownie points or doing things for ‘fun’.
xjrs in reply to XDjames4 months ago
XDjames , I’m registered with UK Research and Innovation MRC news Update and came across this when digging through their links in their latest email:
It’s the latest report on percentage of spending of research funds on specific health categories. Page 31 shows that “Oral and gastrointestinal” is around 2% of the overall funding. Note that this includes ‘Oral’ so ‘gastrointestinal’ will be less than this.
I’ve just compared this with number of sick days per health category from NHS Digital interactive tool:
Month on month comparison peaks at around 8.8% of all absences for Gastrointestinal Issues (May 2019-Oct 2023)
Month on month comparison peaks at around 8.9% of all absences (2019 months only – pre-COVID)
Purely from a sickness absence perspective, Gastrointestinal Issues are under funded by much more than 4 times. This may be increased further from stats into non-working sickness.
It doesn’t take the publicity of the condition for government officials to work out where funding is needed. The figures speak for themselves. It seems public health research has really dropped the ball on this one.
XDjames in reply to xjrs4 months ago
That’s impressive, good spot! It’s what I couldn’t find myself. I’m not sure even my colleagues in that field know those sources. The unmatching percentages are disappointing but not terribly surprising given more publicly understood research needs (cancer, heart disease, infections diseases ). The Guts survey jla.nihr.ac.uk/priority-set… links to the results, which is a kind of research roadmap that (if the researchers are collaborating well enough rather than competing) should lead to large i.e. multi-£m research projects such as the ‘programme grant’ -which is just about the most serious type of UKRI funded research vehicle -and lo here is something I was looking for i.e. a ‘research strategy’ ukri.org/who-we-are/mrc/who… which alas is high-level rather than topic-directed.
I’d love to get the raw data behind the UK HRA. For academic research, some of the UKRI sub-agencies publish details of funded research -‘grants on the web’ but I can’t see anything on MRC. I think I’ll look for a tame researcher who might know how/where to dig.
xjrs in reply to XDjames4 months ago
Thanks XDjames . I saw the results of the Guts survey. I was really disappointed to see that the matter of food intolerances (and how to fix those to be able to eat more normally) which affects nearly every person with IBS, was never mentioned. It also doesn’t mention about the ‘IBS state’ in a person and trying to reverse that state to a normal response i.e. a cure. Some of the questions I could answer myself off the bat and research has already been conducted (e.g. visceral pain in IBS etc.) There is far too much repetition and going around in circles with IBS research. There is only one question: what causes IBS and how can IBS be reversed (cured)? From this a number of sub categories, multiple causes will open up. This can only be found out by studying as many sufferers as possible at an individual level by multi-disciplinary teams looking at all the connections to the gut including neurobiology, microbiology etc. and start noticing the common threads, whilst also firstly looking at all the research and answers that have already been found, to avoid waste in both time and money.
I was invited to be part of the Guts survey panel, since I’d previously stated interest in getting involved, but this had to be in person and in London, so I didn’t attend. They wouldn’t entertain the meeting being held on Zoom. Since a lot of people with IBS find travel or staying away or having to eat out a challenge, I thought this was short sighted.
I wasn’t aware of the James Lind Alliance, so thanks for that.
It is difficult to know how to influence change without being a ‘name’ in the medical field or a celebrity.
In the past I’ve tried contacting senior officials (such as Professor Dame Anna Dominiczak) regarding approaches to research management and even Chris Whitty’s office, but then COVID hit and I felt it wasn’t worth pushing at that time and really not sure what influence I’d have.
ACEF reply:
xjrs3 months ago
You might want to read this thread between myself (xjrs) and XDjames on a similar topic:
From my perspective I have gone to the ends of the earth to find a cure. I was in so much pain at night for so long, I couldn’t get enough sleep. It affects every aspect of my life. I cannot socialise normally since I am unable to eat out and most people’s social lives revolve around food. I can’t stay in hotels and have to always be self catering if I go on holiday. I have to put a spreadsheet together of all the food I need to take with me even if I go away for a couple of days due to my food intolerances. At one point I couldn’t leave the house due to overflow diarrhoea. I felt unable to work and finally ended up deciding to retire early. Since COVID-19 can affect the gut, I am treating myself as ‘vulnerable’ and never meet others in public without a mask, since I’ve got myself into a better place by doing loads of research and I don’t want to get back to the worst of my symptoms again.
Sometimes, life’s stressors have a wearing effect on the body, so even when that stress is gone, the damage has already been done in terms of the microbiome or wearing down of pain control neurons in the brain implicated in IBS, meaning that IBS continues even once life has calmed down.
In terms of desperation, I spent thousands on Nutritional/Functional therapy since I’d given up on the NHS, BUT, they made my symptoms far far worse.
I have been in touch with higher management in the research community to try to get more focus on this and improve the stupid way that research is currently done and funded without anyone taking responsibility for finding a cure – but have got no where (it probably didn’t help that COVID-19 hit around that time).
I spent months and months doing my own research to try to improve my symptoms. I feel so passionate about this that I am collating my findings into a website to try to help others.
The people who make these assessments obviously don’t have IBS themselves or have it so mildly or they can’t or don’t have the ability to empathise with others.
IBS puts a massive burden on the economy creating economic inactiveness (unable to work or retire early) and loads of sick days. The financial incentive is there. The problem is, it is an embarrassing topic, which has a stupid name (no one wants to say they have an ‘irritable bowel’ – just waiting for people to snigger), so we sit there in silence, trying to cover everything up , pretend that we are OK, which adds to the stress and the IBS symptoms. We had a discussion about renaming once on this forum – again that went no where.
matttx1158 in reply to xjrs3 months ago
Brilliant analysis and narrative! I truly can’t add anything to this since you have articulated everything I have done and think about this “mystery” affliction. Only yesterday I was asking my daughter, a Ph.D. trained medical researcher ” What do you guys do in your field? I can’t believe that with all the thousands of presumed brilliant minds in medicine no one has figured out what’s going on in the human digestive system. With decades of dealing with patients and research costing billions and billions of dollars! Not one person!?! There’s no other field of practice where this would be tolerated. And, society still holds the medical profession in such high regard.”. She had no answer.
XDjames in reply to matttx11583 months ago
We can create the ISS, send astronauts to Mars, create quantum computers anddevelop extremely sophisitcated models of physical systems. But we seem to have remarkably little insight about how humans work. Almost everything seems to be empirical -observed behaviour.
matttx1158 in reply to XDjames3 months ago
Personally, I think the “holiness” that we bestow on the medical profession needs to be brought down a few notches to move things in the right direction. It really comes down to a matter of demand and supply. Since healthcare is considered to be a top priority by everyone the demand for it is totally inelastic i.e., people want to get/feel better no matter what. This gives all the power to the suppliers. They don’t have to strive to make sure that people want what they offer; the demand will always be there. They know they have POWER and they use it. Laws, regulations and policies have always protected them against errors, neglect, abuse, and callousness. In the US the number 3 cause of death is medical malpractice. I can go on for ever, but the bottom line is unless human beings need to change something they rarely do. The only change the medical industrial complex wants is to make more money the easiest way it can. This principle is true whether it is in a for- profit system as in the US or a nationalized system such as in the UK Unfortunately for patients, the easiest way for the medical industrial complex to make more money and gain more power is not through innovation in true treatments for ailments; it is through cost cutting, marketing and PR.
IBS Researcher 