How to Protect Yourself

1. Do not let yourself be perceived as helpless 
or a victim.


2. Be careful whom you trust; make sure they are worthy of this precious gift.

3. Maintain clear boundaries between yourself and them especially if they are providing a service for you. They are not necessarily your friend.

4. Write down and record all agreements.

5. Be certain that if someone is speaking on your behalf, they actually represent you and not their own opinion.

6. Let go of people and things that demand you be other than who you are for their own purpose.

7. Be clear.

8. Understand ME politics and those who play within it. Understand their motivations, how and what they represent.

9. Find people who are congruent with your deepest values; check this is so, do not assume.

10. Be aware so you do not get caught up in other people’s Persecutor / Victim / Rescuer games.

Greg & Linda Crowhurst
Stonebird © 2014



Comments

  1. Anne DeanFebruary 6, 2014 at 10:38 PM

    These are all very good points, and well laid out. But it is so unbelievably hard to do when dealing with medical professionals about CFS or ME.
    As I have found out (again) this week - to my dismay.
    I don't want to go into too much detail here, as I'm still reeling from "a good experience turned bad" .
    And my disappointment and frustration of realising that (yet again) I can talk to doctors till I'm blue in the face - but they still choose to dismiss or ignore 80% of my symptoms.
    I'm now starting to agree that the name CFS should be ditched, because the word fatigue is damaging. And trivialises.
    But I naively thought that when referred to a "Centre Of Integrated Care" - the doctors would actually listen to me. And not just focus on exhaustion & stress - while ignoring 80% of the rest of my symptoms.
    Sorry - I didn't mean to turn this into a long story Greg & Linda.
    But reading this good post just reinforced how difficult it is out there - in all our dealings with medical people relating to ME or CFS.
    Sending all best wishes
    Anne Dean

    ReplyDelete

Post a Comment

Popular posts from this blog

DO NO HARM, DO NO BETRAYAL

Image
By Diane  I'm not sure where to start but this is my story so far.  My name is Diane and I'm a carer for my adult daughter, Lili, who is completely bedbound with very severe myalgic enceplalomyelitis.  For Lili, M.E. didn't come slowly.   It very rudely crashed into her life and very quickly stole her health, taking bigger and bigger chunks of it as she deteriorated.  It all began when she experienced a gastric-flu virus of a sort she had never experienced before because this time she never regained her health.  A couple days later, she woke up with agonising head pain 'like her brain was on fire', with severe neck pain – she also couldn't move her neck, and her whole body was paralysed.  She's not sure how long she stayed like this as she was in and out of consciousness but she truly felt that she was going to die because her body was undergoing an extreme crisis.  To cut a long story short, it took a year to get a diagnosis durin...
Read more

When I am 64 and other false positives : The PACE Trial.

Image
Greg Crowhurst 6 th February 2013 “Much of what we think we know based on conventional statistical studies published in the academic literature stands a good chance of just not being  so “  Roger Pielke Jr http://rogerpielkejr.blogspot.co.uk/2012/03/false-positive-science.html Imagine  I am a psychiatrist and for £5 million, say ,  I want to prove that CBT and GET are a safe and useful treatment  for ME. The good news is “ how unacceptably easy it is to accumulate (and report) statistically significant evidence for a false hypothesis ,  according to Nelson and  Simonsohn (2011).  Their frightening  paper “ False-Positive Psychology, ” shows  how  “ undisclosed flexibility in data collection and analysis allows presenting anything as significant ,” .  In fact Nelson and Simonshon statistically  “prove” that listening to “ When I am 64 ” by the Beatles can   make you a couple of years young...
Read more

Pragmatism : Why the ME Leadership is so wrong

Image
There's an argument that goes something like this : “ In the real world almost all ME/CFS research is carried out on people with  Fukuda CFS ...the only way to sort out the ME/CFS mess  is to identify clinical and pathological sub-groups under the ME/CFS  umbrella. ” We could identify it as the pragmatic argument. Except, what has " pragmatism" ever done for us ? In the USA, decades of “pragmatism” has arguably led to the 1% growing richer and the remaining 99% fighting for their  scraps. As Fishoutofwater comments : What have "pragmatic" Democrats done for us in the past decade? They signed off on a disastrous war in Iraq that drained the treasury leaving America trillions in debt. They signed off on deregulation of banks and financial firms leading to the greatest economic failures since the Great Depression. And they signed away our freedoms when they supported the Patriot Act. "Pragmatic" Democrats ..sold our health care...
Read more