Video clip of a Australasian conference on MUS, mentions ME.

[alex3619]

It's a challenge on the whole of science, how so many can be so gullible and/or careless

I want to know how most of the medical profession repeatedly falls for the pseudoscientific stuff.

 

[DokaGirl]

From a 2016 Canadian Institutes of Health Research (CIHR) newsletter ( CIHR is a branch of Health Canada):
http://www.cihr-irsc.gc.ca/e/50100.html



"With regards to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), CIHR – IMHA is committed to supporting high-calibre research that will contribute to the evidence base and develop capacity in this field. ME/CFS is a chronic, complex, multisystem illness. Preliminary research has linked it with disturbances in energy metabolism, immunology, brain and nervous system functioning, cardiovascular functioning, epigenetics, and the microbiome. More research is needed to determine the underlying pathology of ME/CFS, advance understandings of its relationship with overlapping conditions such as Fibromyalgia, and establish effective treatments. An estimated 800,000 Canadians are affected by ME/CFS, Fibromyalgia, or both. The National Institutes of Health (NIH) in the United States and the Stafford Fox Medical Research Foundation in Australia are ramping up investment in biomarker discovery, diagnostic testing, and patient subgrouping for ME/CFS. You will see in this newsletter that CIHR-IMHA recently launched a series of Catalyst Grants, with two dedicated to ME/CFS. These grants are intended to serve as seed money to support research activities that represent a first step towards the pursuit of more comprehensive funding opportunities. We are also seeking to engage in partnerships with other funding agencies to advance the ME/CFS research agenda. This is a fascinating area of research in which investigators from many disciplines have the potential to make groundbreaking contributions."

As the CIHR said, we do know some about ME, and more is needed!

 

[Snow Leopard]

Sooo, I listened to another presentation (the masochistic in me...) from Megan McEwen, a kind of physical therapist.

Ms Megan McEwen is a leading Clinical Exercise Physiologist based in Auckland central, but often travelling beyond to visit clients in need. Megan has owned and directed her own business since 2012 and has been in the industry as a Clinical Manager and Rehabilitation Practitioner/Scientist since the professions infancy in NZ more than 10 years ago. Megan has been in the general health and research industry for more than 15 years. Megan is a published author in a range of scientific journals and is also a registered postgraduate student research supervisor at a local tertiary institute. This position allows her to stay updated with current medical, scientific and exercise research which she can academically analyse and put back into her business to help her clients.

Megan has a mobile service which helps those afflicted with many medical conditions. While Megan works with a wide range of illnesses, her specialised fields, and areas she is most passionate about, are in helping those with “invisible illnesses”. These include those with psychological distress (including depression, anxiety, stress and burnout) and mismanaged chronic pain and fatigue conditions (including somatoform disorders, CFS, Fibromyalgia, CRPS and central sensitisation disorders).

from: racpcongress com.au/speaker/ms-megan-mcewen/
www racp edu au/docs/default-source/events/congress-2019-presentations/racp-tues-7-masterclass.pdf?sfvrsn=619a181a_2

What Other Clinicians Often Say
 “Oh it’s just exercise – those trainers only know about muscles and what exercises work them”
 “My patient is in pain/has fatigue. You shouldn’t be exercising someone with these symptoms”
 “This is far too much exercise” OR “This is far too little exercise

When to Prescribe Exercise As soon as you:
 Find out someone has a functional disorder
 Identify mismanaged symptoms
 Notice things are spiralling down and/or they are out of options
 Notice boom/bust patterns
 Notice avoidance behaviours or growing illness belief

If You Are Prescribing Exercise
 Do less activity, more frequently
 Aerobic exercise is best for most conditions but sometimes much less manageable
 Get them exercising without them thinking about it

www meganmcewen co nz
https://web.archive.org/web/20190130090302/https://www.meganmcewen.co.nz/what-is-cfs
https://web.archive.org/web/20190130091759/https://www.meganmcewen.co.nz/what-is-boom-bust

Also, research papers:
Poor Correlation Between Three Popular Functional Movement Tests in Professional Rugby Players Indicates Each Test Addresses a Different Aspect of Movement Quality
http://sportsmedicine.co.nz/wp-cont...-Journal-of-Sports-Medicine-2017-Vol-44-1.pdf
Strength and neuromuscular adaptation following one, four, and eight sets of high intensity resistance exercise in trained males
https://link.springer.com/article/10.1007/s00421-011-1944-x
The Effect of Training Volume on Lower-Body Strength
https://journals.lww.com/nsca-jscr/...ffect_of_Training_Volume_on_Lower_Body.5.aspx
Adverse events among seniors receiving spinal manipulation and exercise in a randomized clinical trial (commentary/article review)
https://www.journalofosteopathicmedicine.com/article/S1746-0689(15)00042-5/abstract
Thinking while standing : an exploratory study on the effect of standing on cognitive performance
https://unitec.researchbank.ac.nz/handle/10652/3941

But without much success: one physician would not even touch the IOM Report Brief, which is 4 pages long as we know. I mean literally would not take it from my hand. Another doctor gave me back the CDC info without putting it on my file as I had politely requested. And, another protested, but grudgingly accepted other government info. I do think government summary info re the biomedical nature of ME is a good thing to give physicians, but it's not really welcomed either.

Most doctors don't read anything about anyone else's illness, so why yours? It is their attitude. Most doctors have no interest staying current with current research and spend almost no time reading medical research. They certainly don't want to read anything that challenges their own experience. The only thing most doctors interested in is long-established clinical practise guidelines - because they're afraid of getting into trouble if they don't follow them.

 

[large donner]

There's clearly a concerted global effort to rebrand all these disorders of unknown aetiology under the MUPS/functional umbrella and cart all these patients off to psych. It's a good tactical move now that PACE has been debunked. Instead of continuing to fight on the ME/CFS battlefield where patients and their advocates have had some modest success in pushing back against bad science, they are simply declaring that ME/CFS doesn't exist as a clinical entity. The empire strikes back.

The obvious retort to that is that as they are claiming that all functional disorders are the same thing they have therefore proved with PACE that CBT and GET doesn't work for any condition described as MUS.

 

[rvallee]

If they believe they are better then you have quite simply succeeded.

Literally how faith healers work.

That should give any reasonable person pause.

 

[rvallee]

The obvious retort to that is that as they are claiming that all functional disorders are the same thing they have therefore proved with PACE that CBT and GET doesn't work for any condition described as MUS.

That's the danger with putting all your eggs in one basket. Once the basket is on fire, no egg is safe.

 

[Jonathan Edwards]

Kenedi:
all functional disorders are the same, that they present in different ways, but they're related to the same neuroanatomy and neurophysiology.

Yes, ducks, it's called the brain and it is near the top of your head.
Amazing what modern science has proved.

It really is an interesting exercise in psychology to watch the two ladies in the video - especially the one on the right who wishes she could just disappear down the plughole.

 

[Obermann]

I don't think this is valid any more, it was a decade ago though. The problem is we know tons of things, like 2500 biomarkers, clearly showing pathophysiology, but we do not know which are primary, secondary, or false positives, or which are the most critical. So we have a long way to go. But pathophysiology can be established using only 1949 technology, CPET.

CPET establishes that there are objectively measurable consequences of post-exertional malaise in ME/CFS, but the underlying process is still unknown. The same can be said about biomarkers or physiological abnormalities. Moreover, most of them have been observed on a group level, which means that for each positive study there is a proportion of the patients that don’t have the observed biomarker/abnormality. We don’t know which effects are primary and which are secondary and we don’t know the causal relations between them. If we claim that the pathophysiology is known, we should be able to answer these questions.

 

[Jonathan Edwards]

ooo, I listened to another presentation (the masochistic in me...) from Megan McEwen, a kind of physical therapist.

So this is the plughole lady I think.

She is seriously out of touch with reality. Maybe she thought Kenedi was taking too much attention away from her hairdo.

I think these people will shoot themselves in the foot in the end. But, as we have discussed before, they may have the trick salamanders have of growing another foot.

I suppose it would be mind-boggling if we didn't have exactly the same stuff from the five Brexiteers or that guy with golf courses. Where in this world can one find a corner of sanity. Even the New York Review of Books is junk these days.

Ah! S4ME, I forgot.

 

[Jonathan Edwards]

So he recognized that the research hasn't identified a pathology, but that it suggests there is one that is limiting what patients can do, for example with regards to exercising and building up activities.

... it might be an option to point him/her to the CDC website or perhaps the IOM-report summary.

I am not sure that he recognised that the research shows anything. And I fear that in terms of how we normally rate evidence in medicine he would be right. The research suggests that there might be this or that abnormality but I think it is too strong to say it suggests that there is. I think I can pretty confidently predict that most currently floated ideas about abnormalities will not stand up to the test of time - maybe none of them will.

If I was pointed in the direction of CDC/IOM I would come to the view above that nothing so far adds up to much. If this is the best evidence there is, it is not going to convince a medic familiar with assessing research. It looks like preliminary stuff, and it is. Accounts of established pathology don't read like this stuff.

I hate being negative so often but these people are not going to be driven off be weak arguments.

 

[Jonathan Edwards]

As the CIHR said, we do know some about ME, and more is needed!

But do they actually say that?

ME/CFS is a chronic, complex, multisystem illness. Preliminary research has linked it with disturbances in energy metabolism, immunology, brain and nervous system functioning, cardiovascular functioning, epigenetics, and the microbiome.

ME is chronic and complex but as to which systems mediate the problem I don't think we know. Preliminary research may have linked it to various sorts of process but has it actually found anything reproducible? CIHR don't say. If something definite had been found surely they would have said?

 

[ME/CFS Skeptic]

If I was pointed in the direction of CDC/IOM I would come to the view above that nothing so far adds up to much.

That would be alright.

A lot of doctors (pretty much all doctors in Belgium) think CFS is just long-lasting fatigue or something like a burnout. So if they are directed to the CD website or IOM report they'll see that the consensus view by experts is that this is a severely disabling and chronic illness and that researchers suspect an underlying pathology and are studying possible clues pointing to the immune system, metabolism etc.

 

[alex3619]

If we claim that the pathophysiology is known, we should be able to answer these questions.

That is like saying if we claim we know pathophysiology in diabetes then we must understand everything about diabetes ... or cancer, or whatever. We don't. We know some of the pathophysiology, but we are a long way from knowing all of it.

 

[alex3619]

Yes, ducks, it's called the brain and it is near the top of your head.
Amazing what modern science has proved.

The brain? Isn't that an irrelevant squishy thing that houses the mind? The mind is all important, all powerful ... the squishy thing is not. [sarcasm]

 

[DokaGirl]

@Jonathan Edwards, to me "knowing some" can be very basic. The links found could be very basic. There links to various abnormalities in various symptoms do need replication. We need more understanding of the underlying pathology. I view mention or alluding to findings in these different systems as a hopeful start. So yes, there is not much definitive here.

Would you view the 2 day CPET as definitive?

I am answering this right after dental surgery. I hope it's cogent!

 

[Jonathan Edwards]

So if they are directed to the CD website or IOM report they'll see that the consensus view by experts is that this is a severely disabling and chronic illness and that researchers suspect an underlying pathology and are studying possible clues pointing to the immune system, metabolism etc.

Sadly, I don't think this is realistic. If medics are directed to CDC or IOM websites they will see what they take to the the consensus view of a group of enthusiasts trying to up the chances of getting the next grant funded. Unfortunately medical pronouncements are as much subject to spin as any other and doctors know that.

For sure ME is a severely disabling illness but all you need to know that is to have a friend or relation with ME. Researchers suspect underlying pathologies but there is no consensus. Each has a pet theory.

Some medics may be impressed but to be honest, the first few lines of these reports are enough to tell me that there is heavy spin. Maybe I am an old cynic but I don't actually think my reaction is very different from what it would be for most of my colleagues. All medics are used to being bombarded by hyped claims.

 

[Jonathan Edwards]

Would you view the 2 day CPET as definitive?

There seems to be a reproducible difference in 2 day CPET results but I am not that confident it tells us anything about a causal of ME rather than an epiphenomenon. I don't think it tells us what the basis of PEM is.

 

[Sean]

Literally how faith healers work.

That should give any reasonable person pause.

It is exactly the same 'methodology' used by the alt-medicine clowns. Homeopaths, crystal-gazers, shakra-realigners, etc.

Yet here it is, right in the core of mainstream medicine, doing incredible damage to both patients and medicine's own credibility.

 

[Octogenarian]

If medics are directed to CDC or IOM websites they will see what they take to the the consensus view of a group of enthusiasts trying to up the chances of getting the next grant funded.

Thanks for the warning. My grandson is a 3rd year medical student, and I've never tried to "educate" him about ME/CFS. I've never asked him what they are teaching about the disease. I'm waiting.

 

[Obermann]

That is like saying if we claim we know pathophysiology in diabetes then we must understand everything about diabetes ... or cancer, or whatever. We don't. We know some of the pathophysiology, but we are a long way from knowing all of it.

I think we have to agree to disagree on this one. According to Wikipedia, “pathophysiology seeks to explain the functional changes that are occurring within an individual due to a disease or pathologic state”. Without an understanding of mechanisms and the role of observed abnormalities, I would not claim that the pathophysiology is known—not even that it is partly known.