Psychology Prof comments - Mitochondria not Hypochondria

[pictureofhealth]

From the UK, sensible assessment of where we are (or more accurately, where we are not), in ME research and treatment, from a Prof of Psychology:

http://www.publicservice.co.uk/arti...=Health+Overview&article=15476&forumid=331851

Includes deconstructing the harmful ME psychology paradigm, as well as advocating biomedical research/treatment in ME as the fundamental path forward.

Includes some interesting comments/research that I was not aware of before now.

I hope she gets together with ME Research UK.

Not entirely sure where to post this, so hope this is the right spot.

 

[Francelle]

Haven't read it all yet but what I have read sounds like she has an excellent handle on the crux of this condition.

 

[Sasha]

V. interesting find, picture! Particularly:

In order to help at least some people recover, it would seem a good use of resources for the NHS to screen ME/CFS patients for low mitochondrial function, adrenal problems (not just testing cortisol levels at midday) and mycoplasma infections. The latter can be treated by antibiotics, which if administered early on could mean that these individuals would avoid having to suffer this debilitating disease for decades, with the consequent weakening of their adrenal glands. Removing this infection is unlikely to lead to an immediate cure for long-term sufferers because of collateral damage to other bodily systems, but there must be a chance that a proportion of individuals will regain their health and lead happier and more productive lives.

Has anybody in the UK had any luck on trying to get the tests she mentions done on the NHS? Are those things treatable on the NHS (apart from the mycoplasma, which she says is treatable by antibiotics)?

I'd like to be able to go to my GP with a list of tests and knowing that if the tests come up positive, there is some treatment.

 

[Enid]

Thanks to you all for this stunning piece of news. My tests basic NHS with nothing more than weak anti-smooth muscle antibodies and ME typical "high spots in the brain". Nothing explained or done. Adrenal problems acknowledged later and again nothing done to aid. If the tests proposed were done as routine and treated at the time may I agree save years of ill health with all that follows. Oh forgot to add thyroid problems found and treated but really didn't change the picture. Hoping better luck for everyone else.

 

[Francelle]

Just a heads up about treating Mycoplasma Pneumoniae.

My experience with Myco Pn. was very distressing. Normally fourteen days of Doxycyclin gets rid of Myco. Pn. or so they say. Not so in my case evidently.

Nor too would it seem, that five concurrent antibiotics both IV and oral administered while I was in hospital for a terrible cough and Myco. Pn, did not get rid of the Myco. Pn. as I was found to have it again two years later. So either, those antibiotics did get rid of it and I was unlucky enough to get it twice or I had a chronic infection for the intervening two years.

I would definitely recommend pushing to have titres repeated after any treatment for Myco.Pn.

 

[pictureofhealth]

Yes, just treating one aspect of ME at a time never seems to work does it? There is a bigger picture somewhere behind all this. We were hoping XMRV would be it I guess - a 'puppetmaster' as someone so eloquently put it (?Cort), that disrupts the immune system/cellular identity at a fundamental level, making all other approaches ineffective until the main player is addressed.

 

[pictureofhealth]

btw - "Mitochondria not Hypochondria" - what a great title - wish I'd thought of that!

 

[justy]

This is a great article, thanks for finding it Picture! I dont know how many people in the public sector would have read it, but its so reassuring to know there are professionals in the U.K who understand and believe in the reality of this disease. Her article was very well informed, but simple. I wonder therefore why its so hard to get Doctors to understand this?