Rehabilitation is not synonymous with Recovery....

"Rehabilitation is not synonymous with Recovery...."

Two otherwise hidden moments in a carer's life yesterday . Reading the quote above, from Barbara Wilson, University of Cambridge,  in Time magazine and going "Wow", for it was like stumbling across the meaning of the mysteries,  then shortly afterwards lying with  my wife on the bed; it's  early afternoon and we  aren't  going anywhere.

 My wife  doesn't know how to cope with the pain she is in  a second longer.

..That's us.

ME patients are continually denied physical treatment, the orthodoxy is to administer CBT and GET - rehabilitation, while not dealing with the underlying disease process. Of course my wife has all manner of things going wrong in her body, her physical suffering day to day , her quality of life is  petrifying. 

Alcoholism, you know,  is even treated as a physical disease , but ME , flying in the face of any measure of reason is still put down to wrong thinking.

Just  take  this from the superb CFS Untied  :

"Miller also proudly announced the new CDC/CFS website and it’s many updates, including a new Toolkit for state, city, and local health officials.  Most of us have already been to the website and found an abomination of CBT and GET recommendations – including a link to the GET program at St. Bartholomews (Professor Peter White), a notation that the pain of a CFS patient does not require narcotics, and the very first link on the top center of the page brings us to the Childhood Risk page….which talks about childhood abuses and how they can precondition the brain to not deal appropriately with stress.
Part of the toolkit treatment section includes the following statement:
If CBT is not covered by insurance, people with CFS can substitute a provider who is knowledgeable about CFS. This provider can lead CFS patients to understand how their behavior is impacting the illness, and set up activity and exercise programs that are useful."
The quote I began this with about rehab  from Time magazine (Nov 1 2010 p. 45),  refers to Sensecam, a Microsoft device to help people cope who have lost their memory. At best, all rehab in ME can do - the "activity and exercise programs "  the CDC go on about ;  though certainly not in the way they recommend their use - to change "sickness beliefs" ,   is  to help someone maybe  cope a little better- even then, as the research consistently   shows, it is much more likely to make the severely affected, like my wife,  a lot ,lot more ill. 

Those precious words , that so succinctly sum up everything we know about the current approach to ME : Rehabilitation is not synonymous with Recovery...."need  to be emblazoned across the chest of anyone  who sets out to implement a CBT and GET approach

People will never be helped and I will explode with exasperation one day,soon, 
if ME is not treated physically.

 Listen , though, to this prize quote from the CDC - again on CFS Untied :

"Dr. Elizabeth Unger, Acting branch chief, CFS branch, CDC
Dr. Unger reiterated that there is nothing wrong with the Reevesian implementation of the Fukuda definition, it’s just that we don’t understand how the CDC is using the definition, and that we need to be made aware of that.  Dr. Unger said the same thing in May.  During the interim 5 months, there has been no effort to explain their usage to us, so we are still waiting.  She did, however, say that… “The day of a simple cfs patient versus control situation is probably over and we need to have cfs with a dimensionality…”
What in the name of all that is sensible and sane , does the prospect of  "cfs with a dimensionality…" mean ?? Read it and shudder..

... then do all you can to jettison that abhorrent "CFS" label from your life.


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