But I’m keeping this open while I watch the SBS Insight program and will edit & update as the mood takes me, so maybe ALMOST a live blog depending on how I feel.
There’s been a lot of talk on the Australian ME/CFS facebook page today, with many people expressing severe doubts that it will be any good. One thing that prompted this was this article: Can exercise help manage the symptoms of chronic fatigue syndrome? There’s an immediate OH HELL NO knee jerk here.
But on the other hand, maybe not. The title says “help manage” not “cure”, which is good. But author Nathan Butler says the PACE trial showed GET helped more than pacing. which is unadulterated bullshit. It did no such thing. (Discussion Link) On the third hand, he says “Exercise needs to be tailored, individual and flexible” and “I often describe exercise as any physical activity that is above and beyond what you normally do so that may be sitting up in bed for those that cannot leave their bed” – which is good.
I’m a minor advocate of GET, when done carefully. Or as some people term it to get away from the PACE stigma, mobility therapy. I believe that non-aerobic activity like stretching and strength are good for me. I find them quite easily tolerated in small doses, and in theory, being stronger means less exertion and therefore more ability to do things without malaise. Not that I’m doing anything right now while I’m in recovery from pneumonia, but I am looking forward to getting back to it.
Bur the show may not even be about this. Watch this space…
And it begins. The teaser ad is worrying, Devastating etc but then… is recovery possible? A perky young woman says she’s fine.
And an article by a participant came out yesterday on MEAustralia.net and it’s also very worrying. It seems that some of the clinicians being interviewed are very wedded to their problematic treatments.
The participants with ME/CFS seem sympathetic. They are all young.
The kid, Luke, represented by his mother, is heartbreaking, and so familiar. “Post-viral thing.”
Adele, twenty-something, sporty, and active, had glandular fever. “My body was lead.”
Andrew, 31, is the participant who wrote the article above. Glandular fever and shingles onset. Went to the Melbourne Fatigue Clinic.
Deb, recent maternity leave, “some kind of virus”. Doctor did not believe her.
Mark Donohoe, the GP, brings up PEM.
Ketra lives in a nursing home, severely bed bound. Same old post-viral onset.
Alistair Lynch, pro footballer, thought the onset was a hangover but it never stopped.
Andrew, climate scientist, had teens with ME/CFS; one had no obvious onset, the other glandular fever.
The inability of doctors to do anything, and the disbelief from the general community and some health professionals is par for the course. Luke’s mother says she always has to show it’s not Munchhausens by proxy. Depression is commonly suggested. GP Mark concurs: I’ve heard these stories a hundred times. Noted that 4x more women than men get it, which is the case with most autoimmune diseases… so is it?
Sonya Marshall-Gradisnik (Griffith University) talks about genetic ID, the calcium channels, finding genetic markers. Calcium can’t get into the muscles so they don’t work.
Paul Fisher, microbiologist, works on mitochondria – CFS patients have something wrong here.
Chris Armstrong, metabolomics, found many differences in energy metabolism metabolites, amino acids rather than sugars used. Gut microflora seem implicated.
Andrew Lloyd, Adelaide, infectious diseases: an infection can be a trigger for CFS. It’s probably something in the brain – not the mind. (Evidence seems lacking. Is he even an active researcher like the others?)
“Over a hundred double blind trials and not a single therapy researched as yet has benefit over placebo.”
Andrew Gram father of 2 with ME/CFS – nutrition, meditation, mindfulness, optimism. Son is partly recovered. “Significant improvements”.
Andrew L wrote the 15 year old guidelines, CBT & GET was all we knew.
Andrew B tried it and oh, so not good. Blaming the patient for not doing it properly.
Adele – saw the same one, and it was successful for her. Started slow, with walking to the letterbox, then down the street etc,
Nathan the exercise physiologist: seems OK. Pacing to get baseline, Best to be cautious, Do what does not exacerbate symptoms. In some cases just sitting up in bed is enough exercise.
Mark Donohue: my patients don’t do well with GET. It occasionally works for some people.
Jennie asks Andrew L should we update the guidelines? Nah, we don’t have anything new.
Ketra: guidelines should be changed to match the recent US update.
Adele is all better now and playing state netball. Lucky lucky bastard.
Alaister L, AFL also is better and back to footie. Also, lucky bastard.
GP Mark: great outcomes like those are very rare. Getting enough back to think you’re better tends to mean getting about half way. Many don’t make it. Seven suicides among his patients.
Deb: is part way better. Works 3 days a week, rests two. Sometimes runs.
Ketra: is not better. Does some mild exercise with a physiotherapist.
GP Mark: important to acknowledge the depth of the disability. Many doctors and specialists don’t. NDIS often doesn’t. They want the blood tests which don’t exist. Also, we have no treatment. CBT and GET certainly won’t be the long term answer but it’s what we have now.
Well, it wasn’t too bad. They certainly weren’t hyping CBT & GET as much as the community had feared – but also did not condemn it as much as the community would hope. Nobody questioned the reality of CFS, and they did critique the medical establishment’s failures. But also nobody questioned why CBT might even be remotely relevant to treating a disease that is not a mental illness.