Discussion of suggestions for the ME/CFS Priority Setting Partnership, deadline 5th July - extended to 7th July.

A few basic research questions that occur to me:

  • What are the illness patterns in ME?
(What proportion have a relapsing/remitting illness, what proportion remain broadly stable as long they pace well and manage to avoid other illnesses, surgeries, and major life events, and what proportion deteriorate over time? Are there any other recognisable patterns?)

  • How long do remissions last?
(Important when looking at recovery rates; from my own history of lengthy remissions, I'd suggest five years is the minimum period for which 'recovered' patients should be followed up.)

  • How would we measure improvements due to treatments?
(Return to work, education, caring, or normal family life would be expected with recovery, but how do we define smaller but significant gains in function?)
 
strategist said:
Other than biomarkers, it would also be useful to establish a different approach to care for ME/CFS patients than the BPS approach.
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I thought about this the other day. I saw a report on a news website about a small trial where GPs would be able to prescribe financial and welfare benefits advice, to combat the stress and depression associated with being in severe financial difficulty.

If skilled advisers were available (which is quite a big 'if'), the ability to prescribe this kind of advice – alongside support for employment, housing, and personal care issues – could potentially make more difference to ME patients' health than any amount of bloody CBT.
 
Graham said:
Comparison with "normal" is, of course, very useful if we are looking at the performance of a large group of people with ME to see whether a particular intervention is What I was looking at was a very simple, 5 minute x2, unsupervised test, that showed a pattern of response unique to people with ME: something that could be used at an individual level, just as an early, simple indicator.
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Interesting. I have severe ME and my cognitive functioning has been badly affected (but not as badly as my physical functioning). I have issues, like most of us, with memory, language, concentration and the fatigue that all of these things cause and that also exacerbates the problems I have with them.

What is really potentially thought-provoking, though, is how similarly my daughter and I are affected by our cognitive dysfunction, although if anything she gets tired more quickly than I do from talking and thinking. She also suffers terribly with sensory overload, particularly visual and auditory stimuli. Her language issues are just as bad, with aphasia and issues with expressive and receptive language that are worse than mine (unless I’m totally shattered), and her fatigue when caused by mental effort is as just bad and as long lasting as mine is. She can become virtually non-verbal when very tired, she just can’t seem to think through the fatigue at all. It’s like my brain fog times about a million.

The difference is that she doesn’t have ME, she has Post Concussion Syndrome and a brain injury which also caused something called neurogenic fatigue, which affects her physically as well. Her injury occurred on the left temporal lobe of her brain and affected quite specific areas of her brain including the areas that deal with language and memory processing (she doesn’t make short term memories if she’s tired or stressed), but I think anyone who didn’t know that we had different medical issues would be unable to tell as far as cognitive difficulties are concerned. So maybe pwME are, at least cognitively speaking, less unusual than we think we are.

Edited for a spelling mistake...
 
I agree that epidemiological research is important, for example what is the illness trajectory? I think Covid-19 presents an enormous opportunity, in terms of a large new cohort of people, likely greater funding and the potential to use existing medical cohorts. Wherever there are large existing registries of people there is an opportunity to find out how many people developed ME/CFS-like symptoms, and then how many went on to develop diagnosable ME/CFS. I think the UK, with its Commonwealth links, is well-placed to have its researchers undertake epidemiological research internationally, in partnership with local researchers, into the prevalence of post-Covid-19 ME/CFS. Research like that could help to dispel the idea of ME/CFS being a cultural meme, as well as highlighting the issue of ME/CFS in countries where people with the disease currently get very little support. I think having Post-Covid-19 ME/CFS turn up in the top ten research priority list of this process would be useful in the UK environment where it seems many with power want to suggest that Long Covid has nothing to do with ME/CFS.

I also think that there needs to be more careful tracking of symptoms over periods of a month or more to better describe the disease. For example, to find any patterns of activity, sleep and symptoms. Many of us think that we have lower core and peripheral temperatures than normal, and that our peripheral oxygen saturation is lower than normal - it would be good to have very basic things like that tracked and those ideas proved or disproved. Using automated data collection, track morning resting heart rate and morning increase in heart rate upon standing and see if there is a correlation with reported symptoms. Does vision get blurrier during PEM?, does cognitive dysfunction correlate with reported PEM and cardiovascular parameters?

It's interesting that we have so far mostly identified basic epidemiological/disease description research, as well as research on political and socio-economic issues, as well as the sorts of research we don't want. When it comes to specific hard-core biological research - I don't really know enough to be picking winners at this point. I mean, I have ideas every week, but I can't pick just three. I doubt that most doctors know enough either, and nor will most patients who have better things to do than read ME/CFS research. There's a risk that the latest idea in the news will be what makes it into the priority list - last year it was cerebrospinal-spinal issues, before that it was the microbiome.
 
Hutan brings up a good point. If we are to escape from the iron grip of the BPS sucking up all of the funding suggesting international partnerships for research might be a way of combating that by linking to people outside the BPS bubbles elsewhere. I think there is the potential and the will in Canada to do this (proper research).
 
Snowdrop said:
Hutan brings up a good point. If we are to escape from the iron grip of the BPS sucking up all of the funding suggesting international partnerships for research might be a way of combating that by linking to people outside the BPS bubbles elsewhere. I think there is the potential and the will in Canada to do this (proper research).
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yes, which researchers here in the UK are to be 'trusted' to carry out genuine biomedical research?

We are in the mad situation where most of the funding is going to the likes of Chalder, Crawley and co and then patients funding people like Keith Geraghty, and David Tuller to expose the nonsense of their research.

I would prefer to see Karl Mortens group maybe working with Scheibenbogen in Germany on biomedical stuff rather than messing about with graded exercise with the polish research group.

Apart from that we have the Quadram Institute group, who are concentrating on faecal transplants which I don't see going anywhere (IMO).

(I know there is Chris Ponting but he's tied up with the DecodeME project).
 
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Hutan said:
It's interesting that we have so far mostly identified basic epidemiological/disease description research
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Isn't it – it shows that some of us think we don't have enough information about it.

I suggested it because I was struck by something @Jonathan Edwards posted a couple of months ago, re doctors learning about a disease by sitting down and listening carefully to what a group of patients tells them about it. Has this even been done? By experienced, practising clinicians who know how to judge what might be important and what's probably just noise? Diagnostic skills are critical when you don't have objective tests, but you can't do it without insight.

For instance, if PEM is our best chance of separating ME from other conditions, characterising it accurately and then investigating similar phenomena in other diseases has to be a major research priority. If it's not unique, we need to know. How are we to unpick the underlying mechanisms of ME – especially as we often rely on small grants and tiny research cohorts – if we might not always be studying the right patients?
 
Andy said:
PEM - create a definition of what is or isn't PEM using the input of 1000s (preferably 10,000s) of pwME.
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Especially given the increasing and often very loose use of the term PEM outside ME.
Andy said:
ME/CFS - what symptoms do the patient population actually report? Again, what do 10,000s of pwME report, rather than the smaller numbers that have been used to construct symptoms lists previously.
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I agree with your point but I'm struggling with getting my head around the chicken and egg situation. We know that there's a roughly 50/50 chance of people diagnosed with ME or CFS not actually having it as currently defined. So asking them about their symptoms is going to confuse things. It would be a rather massive undertaking to thoroughly double-check everybody's diagnosis before allowing them to participate (though such a double-check could be a good thing if it leads to some people getting a more fitting diagnosis, preferably a more treatable one, but less good for those who get turfed into the functional disorder or MUS waste basket). And on the other hand there are all those not currently diagnosed who wouldn't be reached. There are many reasons for people not getting diagnosed but one could be that they present significantly differently from those of us who do get diagnosed. Conceivably people with gradual onset are less likely to be recognised than people with the better known viral onset.
Hutan said:
but to me almost more important than what is researched is how it is researched.
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This!
MEMarge said:
Many of those initial studies on biomedical science are too small to be significant, they need funding to follow up promising results and see whether or not they still hold up
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Plus to see if the findings even apply to patients with ME as we define it today, i.e. with PEM.

Lots of good ideas posted already so won't repeat them. A couple I don't think are listed yet:

1) Autopsy studies to look for signs of damage in tissues we can't otherwise access. A system to do this well would be quite an undertaking to set up though. A random autopsy here or there looking at one thing in one case and a different thing in another is always interesting but to be truly useful autopsies need to be done in a more planned and coordinated fashion. Wasn't there somebody fundraising at some point to try and set up a brain bank? What happened to that? Worth/possible asking for support for that?

2) How is it that patient reports of harm have been, and continue to be, ignored and dismissed at all levels (researchers, funding bodies, ethical committees, medical professionals of all stripes, benefit assessors, etc) - and what can be done about it?
 
Ravn said:
2) How is it that patient reports of harm have been, and continue to be, ignored and dismissed at all levels (researchers, funding bodies, ethical committees, medical professionals of all stripes, benefit assessors, etc) - and what can be done about it?
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Well said! No research which does not account in detail for harms should be given funding, published, or given credence by such as NICE, Cochrane etc.
 
Slighty off-topic, sorry, but I'm concerned that Crawley and others like her will adapt their research to fit with some of the ten priorities identified and continue merrily on, sucking up research funds to produce misleading and damaging rubbish.

One suggestion I made to the Australian health research funding authority (NHMRC) was that applications in research funding rounds should be accompanied by a letter from a patient charity endorsing the study and saying why it is important. And that when projects are scored on engagement with the patient community, projects endorsed by national charities with lots of members should score better than projects endorsed by, for example, the Bristol chapter of the Esther Crawley fan club. That way, if national charities endorse bad research, they are accountable to members, and there is some hope of pressure being brought to bear.

In the case of Australia's NHMRC, having knowledgeable patient representatives on panels selecting research has helped to avoid the worst research and the worst researchers being funded, so that is another strategy in disease-specific funding rounds.

Something has to be done to break the tight grip Esther Crawley and others of her kind seems to have on UK research funding, and put funding decisions on a basis that is more rational than 'how many influential people you are mates with'.
 
Hutan said:
Slighty off-topic, sorry, but I'm concerned that Crawley and others like her will adapt their research to fit with some of the ten priorities identified and continue merrily on, sucking up research funds to produce misleading and damaging rubbish.

One suggestion I made to the Australian health research funding authority (NHMRC) was that applications in research funding rounds should be accompanied by a letter from a patient charity endorsing the study and saying why it is important. And that when projects are scored on engagement with the patient community, projects endorsed by national charities with lots of members should score better than projects endorsed by, for example, the Bristol chapter of the Esther Crawley fan club. That way, if national charities endorse bad research, they are accountable to members, and there is some hope of pressure being brought to bear.

In the case of Australia's NHMRC, having knowledgeable patient representatives on panels selecting research has helped to avoid the worst research and the worst researchers being funded, so that is another strategy in disease-specific funding rounds.

Something has to be done to break the tight grip Esther Crawley and others of her kind seems to have on UK research funding, and put funding decisions on a basis that is more rational than 'how many influential people you are mates with'.
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The only problem with this idea is that Crawley is an advisor to the Sussex ME Society.
 
Yes, it's not really a problem. If there is one study with an endorsement from a well-recognised national patient organisation and another with an endorsement from a regional patient organisation, then the first study should score better on patient engagement.

And then there's the question of potential conflicts of interest when obtaining an endorsement (e.g. the researcher being on the board of a charity) - it's easy to put safeguards against that in place.
 
I filled this in a few days ago. I did not realise you can fill it in multiple times; I am happy though because I will fill it again in May, that time focusing on other things including studies on experiences of harm through exercise treatment, forced exertion of any kind, and more specific data on hospitals.

this time I focused more on severe ME, and on mechanisms of certain symptoms and also symptomatic treatment. There should surely be more information on which symptomatic treatment helps, yet we have very little or none.

So I wrote:

Q1: Why do people with severe and very severe ME/CFS get extremely severe sensory problems (including light, sound, movement etc), and why does exposure to sensory stimulation worsen symptoms significantly and cause physical deterioration - there is no other condition in which this happens as far as I’m aware. What is the mechanism behind it, and what treatment can be used for it? Can we trial drugs currently used in migraine or for epilepsy etc, to see if they might help with light and noise sensitivity, or would other drug candidates be better? This is the symptom that causes me the most pain and affects me the most.


Q2: Why are many people with severe ME and ME in general, unable to stay upright? It doesn’t seem to be directly correlated to PoTS - even people treated with PoTS medication can still find it difficult to stay upright.

What is happening? Are the recent studies showing lack of blood flow to the brain, even in those with ME but with and without PoTS, able to be replicated, and can it be explained why this happens? And what treatment can be found for this? It is one of my most disabling symptoms- that I have to lie flat in bed all day and feel so extremely ill when upright. I do not know of any other condition where this happens to this severity.


Q3: Why do many people with severe ME and very severe ME get very severe pain? Is this mechanism also related to sensory processing - I find both increase together? And what are the best treatments for this pain in ME? (I’ve found lidocaine to be of immense help even when other pain medications do not help to the same extent (note, I should have written, for the burning and severe pain related to ME, in my arms and legs). Yet lidocaine is usually licensed only in herpes pain or in CRPS pain, both of which are neurological pain syndromes).


Extra questions:


Why does exertion of any kind (including exercise, or sensory stimulation) cause post exertional malaise? What is the physical mechanism behind PEM and also then longer deterioration?


I would also like to see a research study on the hospital experiences of those with severe and very severe ME. I have had harmful and extremely traumatic experiences in hospital, where I’ve deteriorated, which no one should have to go through. Yet there’s little to no help for us, and no research on our experiences or what we think will help us

I would like to see more research done on the severe symptoms experienced by those with severe and very severe ME. Although this makes things much harder, I think some way needs to be found to include us more in research and to look into symptoms such as severe sensory problems (ie how it actually causes deterioration - not just difficulties with processing it or a bit of annoyance), what can be done to help our sensory symptoms and pain (symptomatic treatments), and also some research to find out why it’s occurring.
 
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lunarainbows said:
I filled this in a few days ago. I did not realise you can fill it in multiple times; I am happy though because I will fill it again in May, that time focusing on other things including studies on experiences of harm through exercise treatment, forced exertion of any kind, and more specific data on hospitals.

this time I focused more on severe ME, and on mechanisms of certain symptoms and also symptomatic treatment. There should surely be more information on which symptomatic treatment helps, yet we have very little or none.

So I wrote:

Q1: Why do people with severe and very severe ME/CFS get extremely severe sensory problems (including light, sound, movement etc), and why does exposure to sensory stimulation worsen symptoms significantly and cause physical deterioration - there is no other condition in which this happens as far as I’m aware. What is the mechanism behind it, and what treatment can be used for it? Can we trial drugs currently used in migraine or for epilepsy etc, to see if they might help with light and noise sensitivity, or would other drug candidates be better? This is the symptom that causes me the most pain and affects me the most.


Q2: Why are many people with severe ME and ME in general, unable to stay upright? It doesn’t seem to be directly correlated to PoTS - even people treated with PoTS medication can still find it difficult to stay upright.

What is happening? Are the recent studies showing lack of blood flow to the brain, even in those with ME but with and without PoTS, able to be replicated, and can it be explained why this happens? And what treatment can be found for this? It is one of my most disabling symptoms- that I have to lie flat in bed all day and feel so extremely ill when upright. I do not know of any other condition where this happens to this severity.


Q3: Why do many people with severe ME and very severe ME get very severe pain? Is this mechanism also related to sensory processing - I find both increase together? And what are the best treatments for this pain in ME? (I’ve found lidocaine to be of immense help even when other pain medications do not help to the same extent (note, I should have written, for the burning and severe pain related to ME, in my arms and legs). Yet lidocaine is usually licensed only in herpes pain or in CRPS pain, both of which are neurological pain syndromes).


Extra questions:


Why does exertion of any kind (including exercise, or sensory stimulation) cause post exertional malaise? What is the physical mechanism behind PEM and also then longer deterioration?


I would also like to see a research study on the hospital experiences of those with severe and very severe ME. I have had harmful and extremely traumatic experiences in hospital, where I’ve deteriorated, which no one should have to go through. Yet there’s little to no help for us, and no research on our experiences or what we think will help us

I would like to see more research done on the severe symptoms experienced by those with severe and very severe ME. Although this makes things much harder, I think some way needs to be found to include us more in research and to look into symptoms such as severe sensory problems (ie how it actually causes deterioration - not just difficulties with processing it or a bit of annoyance), what can be done to help our sensory symptoms and pain (symptomatic treatments), and also some research to find out why it’s occurring.
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Great questions @lunarainbows
 
My daughter has not filled the survey out yet but her half joking quip when first looking at it was
To determine the medical education, worldview and mode of patient interaction for medical staff involved with ME/ CFS care. Development of medical practitioner assessment scale.
 
Trish said:
Which is why it's important to specify national ME organisations, specifically the MEA and AfME.
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Only if AfME would at long last make a statement condemning Crawleys research.

To date, I don't think they have ever spoken out against any of it.

eta: and although MJW has now retired, when AYME were still in existance they were Crawleys main 'patient support' used to get REC approval for many of her projects.
When AfME took over, apart from saying they were not continuing to fund one particular bit of Crawleys research 'by mutual agreement' they never officially stated that they were also severing relations previously held with AYME.
 
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