UK Research Collaborative Conference in Newcastle: 13th - 14th October

[elliepeabody]

Back streaming

 

[snowathlete]

I laughed out loud at the "family-based approaches to treatment" bit because it's clearly hinting at family therapy. Interesting data nonetheless. Looks like there may be a role for the mother's diseased microbiome being passed on to the child at that crucial early age, setting them up for problems later on when puberty hits.

My mother is an expert in family therapy - has run family therapy department in the NHS for years - and I'm certain she would say this idea is a nonsense when it comes to true cases of ME/CFS.

 

[Bob]

Which autoantibodies?

Probably a reference to this:

Antibodies to ß adrenergic and muscarinic cholinergic receptors in patients with CFS
http://forums.phoenixrising.me/index.php?threads/antibodies-to-ß-adrenergic-and-muscarinic-cholinergic-receptors-in-patients-with-cfs.40109/

 

[snowathlete]

The Simon Collin talk 'Cohort Profile: The Collaborative on Fatigue Following Infection (COFFI)' was intriguing. It aims to set up an international consortium of post-infectious cohorts, looking at post-infectious fatigue (including but not restricted to mecfs)

So, I know a lot of people will be suspicous of a project driven by Esther Crawley, Peter White and Andrew Lloyd. But there are some really interesting things about this study, not least that it's huge, and includes the Dubbos cohort (one of my favourite studies), the Katz/Jason huge NIH-funded prospective study of glandular fever in college students and the intriguing Bergen Giardia outbreak (Giardia lambia is a nasty gut parasite) that led to many cases of IBS and CFS.

Also, Collin said there had been an attempt several years ago to construct a huge UK cohort, including a Gene Wide Association Study, that failed to get funding. You could see that as one arm of the Grand Challenge mapped out by Stephen Holgate, that would add gene expression, proteomics, metabalomics and immune profiling (and more) to this approach. The feedback from rejected grant applications was that the combination of a) a broad and disputed case definition - and almost certainly a lot of patient heterogeneity (ie probably lots of different illnesses), coupled with b) the lack of specific hypotheses made it too vague. They hoped by focusing on post-infectious cases (getting in at the beginning of the illness too) they would have a much 'cleaner' patient cohort, combined with much greater statistical power (ie ability to find real effects) from a huge group of cohorts, would given them more chance. Potentially patients (the mecfs ones) from this international consortium could be just what's needed for the Grand Challenge and other studies.

I agree it has some interesting potential. I do hope that they are going to follow the patients for a number of years post infection, specifically the college CFS ones, as there is likely a heterogeneity (at least within this sub group) with some people having one thing that they can get over within a couple of years and others having something(s) else that does not abate. The comparrisons with other post infectious giardiasis and mono ought to be interesting and of value.

 

[Sidereal]

Probably a reference to this:

Antibodies to ß adrenergic and muscarinic cholinergic receptors in patients with CFS
http://forums.phoenixrising.me/index.php?threads/antibodies-to-ß-adrenergic-and-muscarinic-cholinergic-receptors-in-patients-with-cfs.40109/

That would be my guess too.

 

[Bob]

symptom-focusing

In relation to CFS, I think most BPS researchers may be abandoning the symptom-focusing hypothesis because it isn't supported by research. e.g. It hasn't been supported by the follow-up PACE analyses.

 

[elliepeabody]

Prof Jim Horne:

Deep sleep earlier in the night and more difficult to wake from
REM sleep easier to wake from
Growth hormone released during deep sleep - cell repair and recovery
Sleep doesn't save much energy - only uses about 15% less energy
Mind doesn't switch off during sleep
Natural variation in amount of sleep needed
Body clock has big influence on quality of sleep
Probably designed to have a sleep early afternoon, but needs to be done daily to benefit
Sleep mirror of physical and mental health

Sleepiness and tiredness are not same. Need to be careful when say to patients what is meant by sleepiness and tiredness.

Sleepiness, eyes droop, etc
Various scales for measuring sleepiness - some overlap with tiredness
In CFS problem where fatigue is mistaken for sleepiness - has implications for drug treatments

Non restorative sleep - a puzzle. Generally not excessive daytime sleep with this

CFS / FM - FM more insomnia

Worn out syndrome too much sleep at the wrong time of day for your body clock e.g. jet lag, or sleeping at wrong time of day. This may add to fatigue in CFS. Any sleep for less than 20 mins won't get this syndrome. Too much sleep in day impairs sleep drive at night.

Best way to synchronise sleep with body clock - regular wake up time and plenty of day light.
Keep daytime naps short. Naps are very refreshing as long as short.

Melatonin - might be worth trying but can be problematic. Not sleep producing, but can help synchronise body clock. Can help two to three hours before bedtime.

Studies on sleep in CFS, conflicting. Sleep phenotypes in CFS - worth more study.
Primary sleep disorder which may manifest as CFS/ME, or may exacerbate CFS/ME

Sleep disorders -
obstructive sleep apnoea - patient doesn't know they have it as airway narrowed for short time
also obstructive sleep apnoea syndrome when also sleepy in the day
another sort of apnoea where breathing stops

These disorders may be hidden or making things worse

?, lower leg kicking and waking up, can happen every 2-3 mins for the first hour or so
Also restless legs unlikely to occur in CFS - creepy crawly sensation in legs have to get up and walk around. Very distressing.

Questionnaire 24 questions, sleep quality index, can screen for sleep disorder.

Sleep disorder - breathing - may be the cause of fatigue. Shallow breathing, gasping. Can also be co-morbid. No evidence that treating this can cure CFS.

Sleep disorder can cause excessive daytime sleepiness and can impact on CFS. Be aware of possibility of sleep disorder.

No identified characteristic of sleep in CFS, need more research.

 

[Sasha]

Ironically and inconveniently fell asleep in the middle of that (I think he'd just said you were alright as long as you didn't get more than 20mis) and then the applause just woke me up.

 

[Bob]

Fluge says it takes average of 6 months to see a response to rituximab, and it can be up to a year before a response. I think we already knew that, but I think it's helpful to reiterate it.

 

[SOC]

On Julie Newton's talk (latest tweet first):

Good to be back to biomedical stuff...

Except that Prof Newton appears to study dysautonomia, not ME (and can't distinguish the two, apparently). So what she discovers for dysautonomia patients in general may not apply reliably to PWME.

Yes, many of us have forms of dysautonomia. ME/CFS specialists in the US have been treating low blood volume and other dysautonomia symptoms in PWME for years. This is hardly novel information. That doesn't mean that the cause or treatments for dysautonomia alone are the same as those for ME. In same cases they can actually be damaging, for example when the treatment is exercise and ME patients are blamed when that treatment as used for uncomplicated () dysautonomia doesn't work for PWME.

Prof Newton needs to stop claiming she is researching (and treating) ME/CFS and be clear that she's actually studying generalized fatigue and dysautonomia. Her research in those areas is valuable and deserves the credit it gets. Dysautonomia is an important field that needs more research and clinicians. I'm not sure why she's glommed onto ME/CFS when dysautonomia is less controversial. Or is dysautonomia not a recognized condition in the UK?

 

[Sasha]

They're back in a few minutes, according to Sonya.

 

[Sidereal]

@SOC, Newton actually said during one of her talks today that surprisingly few of her (Fukuda CFS) patients had dysautonomia in one of these latest studies where she studied the heart. She said she excluded those with comorbid depression and she thinks the dysautonomia is less common in "pure" CFS and more common in those with comorbid depression. This seems extremely implausible to me and makes me wonder if she did proper TTT on these patients.

 

[Bob]

Prof Newton needs to stop claiming she is researching (and treating) ME/CFS and be clear that she's actually studying generalized fatigue and dysautonomia. Her research in those areas is valuable and deserves the credit it gets.

Yes, Newton does have a specialist interest in fatigue, but are you sure it's accurate to say that she doesn't study ME/CFS at all? Her studies do include CFS patients.

Dysautonomia is an important field that needs more research and clinicians. I'm not sure why she's glommed onto ME/CFS when dysautonomia is less controversial. Or is dysautonomia not a recognized condition in the UK?

I don't think it's widely recognised in the UK. Almost the only time I've ever seen it mentioned is on these forums, and I had to look up its meaning.

 

[Sidereal]

I don't think it's widely recognised in the UK. Almost the only time I've ever seen it mentioned is on these forums, and I had to look up its meaning.

Same here in Ireland. No doctor I ever spoke to here has ever heard of orthostatic intolerance, POTS, NMH etc. Blank stares. The only stuff they are familiar with are orthostatic hypotension and syncope, but they think those happen only to old people or people with pure autonomic failure. I had to go abroad to get my POTS diagnosed.

I don't think dysautonomia is widely known in the US either, you can read many horror stories online about patients collapsing with POTS and going to the emergency room only to be told it's anxiety. I don't think the sorts of autonomic disorders that strike ME patients are taught in medical schools anywhere.

 

[Sasha]

Livestreaming again now.

 

[SOC]

The Simon Collin talk 'Cohort Profile: The Collaborative on Fatigue Following Infection (COFFI)' was intriguing. It aims to set up an international consortium of post-infectious cohorts, looking at post-infectious fatigue (including but not restricted to mecfs)

So, I know a lot of people will be suspicous of a project driven by Esther Crawley, Peter White and Andrew Lloyd. But there are some really interesting things about this study, not least that it's huge, and includes the Dubbos cohort (one of my favourite studies), the Katz/Jason huge NIH-funded prospective study of glandular fever in college students and the intriguing Bergen Giardia outbreak (Giardia lambia is a nasty gut parasite) that led to many cases of IBS and CFS.

This would only be useful if they were actually looking at the post-infective physiology. Given that Crawley, White, and Lloyd are involved, I think we can safely assume that the research will take as a given that the reason for the fatigue is psychological. If you start with an unproven (and in this case incorrect) assumption, it's pretty much guaranteed that the biases in your study design combined with the way you interpret the results based on your false assumption will lead to invalid conclusions.

Maybe this last couple of days hearing about this conference have made me pessimistic, but this research looks more dangerous than helpful to me. They are now trying to couch their BPS lies in some form of fake biomedical research with the same flawed assumptions. This will make it even harder for the general public to understand their lies and misinformation. That cannot be good for us.

 

[justy]

To all members of this forum... DON'T DON'T DON'T look at this document.. Just don't. I can't quite believe what I've just seen.

Don't think about pink Elephants...'fraid I had to.

 

[SOC]

Yes, Newton does have a specialist interest in fatigue, but are you sure it's accurate to say that she doesn't study ME/CFS at all? Her studies do include CFS patients.

How does she define a CFS patient? Reading her research suggests she conflates chronic fatigue with OI and ME/CFS.

Sadly, anybody can say they are studying CFS without any real verification that the patient has anything more than self-reported chronic fatigue of the mildest sort.

 

[SOC]

Don't think about pink Elephants...'fraid I had to.

Here, have some brain soap. It doesn't work, but at least you can feel like you're making an effort.

 

[elliepeabody]

How does she define a CFS patient? Reading her research suggests she conflates chronic fatigue with OI and ME/CFS.

Sadly, anybody can say they are studying CFS without any real verification that the patient has anything more than self-reported chronic fatigue of the mildest sort.

I think she said in one of her talks that her patients were asking her why she was using Fukuda instead of the ICC.