Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

I hope he can fund more work especially with Long Covid happening now?

 

I kind of understand that, if they're trying to encourage people to come forward to discuss unpublished work. It just never does seem to get published, though, even years later—unless there are obstacles I don't really understand (which is pretty likely, tbh!).

 

From what I understand it's just that publication takes years of time. Some of the stuff that has come out in recent years probably got talked about at these symposiums but took time to fully flesh out. Other stuff probably didn't pan out and didn't warrant getting published.

 

OMF provides a list of publications that they have funded, https://www.omf.ngo/the-end-mecfs-project/

Of the, at time of posting, 20 publications, Ron is a named author on six papers.

 

https://twitter.com/user/status/1568308285614477312


https://twitter.com/user/status/1568326915316142080




WTF? We deserve so much better.

 

Anxiety and Type A personality, really?

 

https://twitter.com/user/status/1568354069319647232


I can’t comprehend how people don’t see how things like “Type A personality” and “Negative Emotional Stress” stigmatize and harm us further. Not only can most of us not get medical care, it’s hard to even find safe documents to share with a doctor should we be fortunate enough to find one who will listen. Lastly, how come lack of medical care, lack of carers and poverty are never on these charts?

 

I doubt that this is intended to imply a direct link between the psychology of a “Type A” personality and ME/CFS.

People with “Type A” personalities are probably more likely to get into car accidents than other people do, but that doesn’t mean that their injuries are psychological in nature. It just means that they’re more likely to get into auto accidents.

A “Type A” lifestyle might make you more prone to getting ME/CFS, but that doesn’t mean ME/CFS is psychological in nature. It may just may mean that living an unhealthy lifestyle puts you at higher risk for ME/CFS, especially when your immune system encounters something truly nasty – and, perhaps, also when you press yourself to recover too quickly.


[I wonder, though, just how much more common “Type A” really is in ME/CFS than in the background – and just how much more likely a patient desperately seeking answers would be to classify themselves as “Type A” in the hope that doing so would be a path to effective treatment.]

 

Speculation about ‘type A’ personality being linked to ME even indirectly is dangerous given the number of people ready to wilfully misunderstand the condition. Given

• There is no reliable evidence of any association between ME and specific personality types, obviously certain personality types might be attracted to specific situations, so for example S4ME membership may contain a disproportionate number of people with ME of a specific personality type, but anecdotally my experience is that across different settings there are no specific ME personality types
• It is still questionable that the concept of ‘type A’ personality, that was developed along side very some questionable research, has any real world or clinical significance

personally I feel that a respected researcher dropping it even speculatively into a model is irresponsible.

 

I appreciate the work Dafoe does in explaining things in an understandable manner, but she shouldn't expect us to be less critical of waffle just becomes it comes from the "right" people. Right in quotation marks because I'm not aligned with any researcher if they don't do their work properly.

 

https://www.news-medical.net/amp/ne...-students-after-infectious-mononucleosis.aspx -> Patients getting ME/CFS did not start out with more stress.

What studies have been done on personality type and stress into ME/CFS have come up negative. Why would a researcher still think this was true? Its part of the BPS model specifically from Chalder that childhood trauma is the cause of ME/CFS, Chalder's whole interview is about stresses in life that led to the condition including Type A self stressors. Its the BPS model and Chalder's research specifically that underpins this and its already been shown in real science to be false.

 

I always find it weird to single out type A personality as the main thing that would make someone overexert themselves.

If you're talking about children with ME, then it is not their personalities forcing them to school, it's the adults around them. How far a child will push themselves to get approval is dependent on how much the adult expects of the child. A child in the early stages of ME will obviously have to push themselves way more than other children if they are expected to perform on the same level. Of course a child tries to avoid punishment, of course a child tries their best to feel accepted and loved.

For adults it’s employers, it’s responsibilities, it’s an ableist society, it’s doctors, it’s the need for food and lack of help that force many people to push themselves. Right now people I know with an active covid infection are expected to show up at work by their bosses and by the health authorities, even though they feel completely exhausted and dizzy. Anything more than a couple of days away from work because of covid is seen as too much.

There are so many factors more relevant to real life than personalities.

 

Not putting out shit about type A personality would be just splendid.

 

Why not use the Myers–Briggs Type Indicator and we can all pack up and go home?

 

https://twitter.com/user/status/1568354105525157888


Patient feedback isn't a bad thing.

 

Oh no, "over exert themselves' is not a risk of developing M.E/CFS unless they already have the illness.

I hope that's what she means by this statement, otherwise she hasn't a clue what is going on.

 

Since it's listeded under predisposition factors I understand it as a hypothesizing that over exertion leads to ME. I wish they would stop mentioning personality as the only factor that could make someone over exert themselves. It's so removed from reality, and contributes to stigma.

 

I don't know. A good old Dungeons & Dragons character build-up is probably just as accurate, and it's fun!

Although nothing beats a Magic 8 ball. I even found the perfect one for biopsychosocial ideologues:

 

I imagine you meant to type hypothesizing and brainfog got the better of you, and yeah it does seem like it. I've worked at a social workplace because of my ME, we would get people in that were on welfare too as a project from the council. Those people were forced to go to work with us and later they would get pushed on to factory work or similar stuff. Working in a factory is hard work and a few of those people were actually pretty laid-back, yet they got worked hard. It's just an example, but as our society seems to value hard work first and foremost it's easy to see how a lot of people of all types could get pulled into overextending themselves.

 

I wasn't as sick yet when I first got in contact with that Briggs-Myers stuff and I hadn't visited forums like these yet so my thinking wasn't nearly as critical as it is now, but even then that whole thing sorta stunk. You determine a set of characteristics for a person and you treat them accordingly.

I've had a period of a number of years where I was quiet as a mouse in school which meant I'd be classed somewhere on that thing, but was exuberant at home which would've classed me somewhere different entirely. I've seen kids I coached(football) "change in personality" during a training when they got frustrated or ecstatic because of certain drills.

It probably was my first inkling that something wasn't quite right with behavioral sciences.