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

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

 

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!

 

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

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

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.

 

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.

 

Literally how faith healers work.

That should give any reasonable person pause.

 

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

 

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.

 

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.

 

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.

 

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.

 

But do they actually say that?

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?

 

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.

 

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.

 

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]

 

@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!

 

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.

 

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.

 

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.

 

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.