A copy of my reply to Dr Oz, hopefully i have touched on some significant points and given him some food for thought. I think it shows our frustration with out sounding like im having a sooky la la (thats whinning just in case its an aussie term people dont get).
I have recently read an article from Dr, Oz mentioning chronic fatigue syndrome. My concern is the lack of understanding of this illness, especially in reguards to promoting CBT/GET as a means of treatment. The article appears to make cfs/me seem like some type of deconditioning. Cfs/me is an immune disorder and possible an autoimmune disorder.
Cbt/get arent promoted as the main treatments for other immune and autoimmune disorders, mostly they are told not to over do things and treatments are centred around controlling their immune system and treating infections one aquires.
The recent cbt/get $5million dollar study undertaken by the psych industry under the guidance of Sir Simon Wessely, who believes that cfs/me is an illness belief, has been altered and adjusted along the way to make it look like they are helpful, in reality they fudged the books for their own benefit. Even by their own criteria the patients who supposedly improved were still very sick. Also noted that the severly ill and beddridden werent included in this study, so participants were hand picked to try and fudge the books more so towards their interests.Why is it so, because he( Simon Wessely and co) are protecting their own bit of turf and if many of these patients in the UK were tested and treated correctly they would find many of them have ongoing immune dysfunctions and chronic infection etc etc that the UK govt dont want to have to pay for or Mr Wessely to have his pet theory on illness belief proven wrong. I think its a failure of duty of care not to test these people properly for immune and infections and treat accordingly. Dam exercise, they even tell people with a cold not to exercise but cfs/me is different???
There is enough research to prove that cfs/me is an immune disorder causing neurological symptoms. I was involved in a recent study in australia where they measured the natural killer cell function of 100 cfs/me patient every 6 months over an 18 month period.
http://www.translational-medicine.com/content/pdf/1479-5876-9-81.pdf
This study to help find a diagnostic marker or test for cfs/me. The study showed this is a common abnormality found in cfs/me low nk function and cd8 t cell dysfunction. When one looks into the function of natural killer cells we see that it fights viruses and cancers as its main job. This explains why so many infections are found in cfs/me and that its not a benign illness as we have a greater increased risk of cancers then do the general public.
All we want is this illness to be taken seriously and not just as a burn out type condition or another form of depression or Simon Wessely's illness belief theory. We want more money into researching this illness, not just pumping a few token dollars into psych treatments like cbt/get that have little value to really treating this illness. We have been left in the dark for too long.
At this stage there is still no treatments for cfs/me. Symptom management is all many can offer. There are treatments used off label with some success such as antivirals and immune modulators like ampligen etc these types of treatments need to be the recommended indications for cfs me who fit the criteria for their use eg low nk function and or high viral titres etc
Also another group of people with cfs/me who are greatly neglected are those with pots- postural orthostatic tachycardia syndrome and orthostatic intolerance. These people have problems standing for any length of time due to poor blood pressure regulations etc and some people cant even sit up for any length of time and remain bedridden. These people would find it impossible to do any type of cbt/get. Many doctors dont even believe these patients and they are generally left at home hopefully with a relative to care for them. Many cant get any type of government health care assistance.
This illness is not something that one would like to pretend just so they can get some type of disability pension, for starters its almost impossible to get any help and if one were to fake an illness then they would be better off looking for one that is alot easier to get disability.
To promote cbt/get as a treatment for cfs/me is really saying to us that you dont think we are ill. Its hard to prove our illness because the research money for cfs/me is pitifull. If they just spent a 1/10th of the money they do on say breast cancer or HIV and put it into cfs/me then we would have answers and treatments that work. We would also have alot more people not needing disability pensions and more people able to contribute to society and pay taxes etc. The money spent on cfs/me research and treatments would yield a far greater return then what is spent on it as well as reduce the pain and suffering of millions of people, giving them their life back.
cheers!!!
Heapsreal
