BBC Radio Scotland: Brainwaves, "ME - The Invisible Disease"

Yes, the PPP doesn't fit well (most glaringly in regards to perpetuation), and I think it's a mistake to try to squeeze ME/CFS into that hole. It also cedes ground to the psychosomatic brigade by arguing on the field of their choosing.

Instead of debating what the supposed "perpetuating factors" actually are, they shouldn't be an issue worth discussing at all - just like for every other disease. No one sits around discussing what "perpetuates" (or even precipitates) cancer or diabetes. They discuss causes, pathology, and treatments.

The concept of predictive, precipitating, and perpetuating factors comes straight from the 4P Factor model, along with protective factors. It's a concept designed and used purely in a psychological context, and trying to apply it to biomedical disease is neither practically nor politically productive.

 

I agree we don't talk about the perpetuating factors in cancer or MS or motor neuron disease once you go down with the illness.

 

Maybe the difference is some with ME do improve or recover so theoretically tackling something like sleep or pain can help that and "perpetuating" lifestyle factors in the newly ill with chance of natural recovery if they were well managed can be boom and bust or stress. But I agree it's language the bps school use and in a biological framework perhaps is odd.

 

Maybe triggered is wrong word....All I know is I was 100% well, then got Coxsackie, went to live in France, not knowing I had Coxsackie, developed all the dreadful GI symptoms, then also a v bad cold as well, travelled back home to Scotland, when I was 'able' - but they couldn't find out what was wrong so I returned to France - massive, massive stress to my body - then a couple weeks later had to come home for good - and I just got more and more ill until fullblown ME. Retrospectively, I always feel I had an abnormal response to Coxsackie virus. But neither did I rest enough, like you, as I was in France with no clue how ill I was.

And maybe perpetuate wrong word too.

 

My point exactly.
Their research is due to be completed this year:
"
The plan is to complete the follow up and close the study by Q2
2018. The results then have to be analysed and a publication written and accepted by a peer
reviewed journal."

http://www.theoptimumhealthclinic.com/wp-content/uploads/2015/06/RCT-research-overview.pdf

For more information on the study please contact : CFSstudy@surrey.ac.uk

eta: just found that they have their own online community
"The Optimum Health Community is for patients and students of The Optimum Health Clinic to meet and share with others, sharing a mindset of growth and healing in a supportive and nurturing space."
http://www.optimumhealthcommunity.com/

 

A

And with the status of our illness so fragile - and hard won - language is extremely important.

 

Sounds like the Yasko methylation forum - only positive posts allowed, no hard questions or disagreement