Discussion in 'BioMedical ME/CFS News' started by Trish, Nov 1, 2019.
I like the simplicity of her feet on floor test!
Doctor Bateman's talk was at a medical meeting.
She talked about how she assesses and diagnoses patients with ME/CFS.
The questionnaires she gets them to fill in before they see her include
- the whole of the SF-36 (Rand-36) questionnaire, not just physical function
(including graphs showing ME/CFS patients have worse function than any other illness group)
- the fibromyalgia impact questionnaire,
- and her own questions about hours of upright activity (feet on floor) on good and bad days.
Healthy: 14 to 17 hours/day
Fibromyalgia: 10 to 12 hours/day
ME/CFS: 0 to 7 hours/day
Topics covered included:
- PEM - what it is, and some research relating to it
- the importance of staying within the energy envelope and some research that showed that those patients who successfully managed their activity to stay within their envelope stabilised and gradually improved over time, and those who didn't got worse.
- orthostatic intolerance including 10 minute stand test and pulse, blood pressure and pulse pressure changes.
- cognitive problems - she ran out of time to say much about this.
A useful talk for educating doctors, I think.
Trouble is that it's an Environmental Medicine meeting. I suspect most docs and GPs in UK would have a tendency to dismiss it due to that. I agree it's a really interesting video though. I thought Dr Bateman came across as a lovely caring doctor who thought hard about helping her patients.
I'm a bit out of it today after yesterday's trip to the dentist (at least in the dental chair I have my feet raised!) and then sitting up too late watching music videos as was tired but wired. Feel like hell today! Will have to try remember to watch it again when brain a bit more engaged.
I agree, it’s a problem
Er, is that really the title of the talk? If it is, eh, it may or may not be relevant to us.
So why care?
I'm not watching it. Why? Because it seems to me lazy IF it applies to ME/CFS and not just a single symptom, and IF it applies, that potential sloppiness hurts.
I disagree, Duncan. Dr Bateman runs a fatigue clinic where she carefully differentiates between chronic fatigue and ME/CFS, with emphasis on PEM and staying within the energy envelope. She also diagnoses fibromyalgia, for which treatment is different. Just because someone sees patients, and gives a talk about, the wider area of fatiguing conditions, doesn't mean they are confusing or lumping different conditions.
I think her sister has ME
Oh, good. So the video is NOT about ME/CFS with a title that just says Chronic Fatigue. Cool.
Had, she passed away as far as I know.
I'm not really sure what's the hangup with environmental medicine or why it's controversial. I get that some people use it to promote weird ideas but if that's someone's excuse then they should feel that even more towards psychosomatic medicine. Which they usually don't.
It's not as if it's particularly controversial that the environment impacts health. There are plenty of studies and statistics on the health impact of environmental pollution. And not just air but water and various pollutants that are present all around us.
It just feels so similar to the initial rejection of the germ theory of disease. Yeah, it's hard to study because you pretty much can't ever isolate one thing for its effects but nobody said medicine was supposed to be easy. Anybody knows the source of that hostility? It's really weird.
@rvallee we have a thread here
One reason is its tie to Multiple Chemical Sensitivity (MCS) which is still very controversial in UK. I did a work placement with HSE (UK Health and Safety Executive) back in 1999 where MCS was one of the things I looked at/collected information about (as well as ME/CFS and Fibro). The general feeling seemed to me to be that it was even more about hysteria than ME. Not by HSE I hasten to add, but from most medics in UK.
You might find this paper of interest.
This is 20 years ago, but I don't see much change in attitude to MCS in UK.
Does propping oneself up in a chair, too exhausted to hold a complete thought but unable to sleep if laying down count as upright?
M.E. and the importance of managing activity to avoid Post Exertion Injury ( I prefer this to the catch all phrase PEM - Post Exertion Malaise - which impiles just feeling bad, rather than the real impact of going beyond the envelope of the capacity that you are capable of)
Welcome to the Forum @AnAbsentPoet. If you feel up to it, you might like to introduce yourself on the Introduction thread. But it's not compulsory.
I understand your preference for using Post Exertion Injury, but on the downside we have the PEM descriptor now, could be confusing to try and change it again.
Hope you find the Forum useful and interesting, and also have fun on our non-ME/CFS topics too. (birds, cats, dogs, videos, books, music, poems etc)
Best wishes from Liverpool.
Probably, if your feet are on the floor!
This is an excellent analogy. In fact, before the germ theory there was the miasma theory , in which illnesses were caused by bad air. Maybe that theory shouldn't have been seen as mutually exclusive with the germ theory , as the outdoor microbiome surely interacts w our insides, and mycotoxin exposure definitely can reduce immunity against common germs.
The ideological hostility to enviromental Medicine probably stems from an ideological blind spot that i will explain further In a second, combined with the fact that a lot of doctors in the field are opportunistic quacks.
However, quacks often fill a void when there is not recognition and research and treatment in a certain area, so we can't really taje that as an excuse for the neglect.
This video explains my take on the ideological blind spot
Malaise in PEM was the term used to describe that flu like feeling when the immune system is flared up. Lily Chu found that healthy people do not experience immunological issues when they exercise but we do and that is one of the things that makes our response to exercise unique.
She makes a lot of distinguishing between post exertional fatigue, which is common to a lot of illnesses and our post exertional malaise which is not.
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