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I agree and I wasn't actually planning to forward that particular one as I felt it would be counterproductive in terms of taking my needs and concerns seriously. It's hard hitting and yes it's a frightening document for patients that ultimately doesn't help us I think. In the end I did not...

Thank you @Skycloud

I wasn't aware of these, they are very helpful, thank you @Denise.

After a long saga for the past 8 months involving chronic infections and adverse reactions to multiple treatments, I am due to have surgery soon, a ureteroscopy, to remove a kidney stone. I would prefer not to have surgery of course but there is apparently no other options given the placement of...

I remember these two, also a long time since I read them, both from ME patients. How to be Sick, Toni Bernhard - Kind of self-help. The Sound of a Wild Snail Eating, Elisabeth Tova Bailey - More a memoir.

Thank you @rvallee for starting this thread and I am grateful for people's various input on the subject. I believe that @PhysiosforME will be publishing a book this year, I am hoping that there will be some useful suggestions and pointers for us in there. :emoji_fingers_crossed:

Without a clear physical cause. Hum... where have I heard this before?

When I hear this from people I don't personally know I tend to think that they are either trying to be 'nice and neutral' or 'clever and informed'. When this was said to me directly the relationship did not usually end well in the long run. It was just a sign that people were not prepared to...

:laugh:

Yes excellent response Nina @EducateME. Thank you.

Thank you for all your hard work Suzy!

:rolleyes:

A surreal and nauseating affair. While the study has been retracted, no formal apology has been given to the participants. This is likely to happen again.

I don't even know where to begin... Points 2 and 3 below really take the cake: encouraging practitioners to make a clinical decision based on their personal emotions and feelings towards a patient.

@Naomi10 Great piece and so on point. I really look forward to the rest of the serie.

''In some ways, it feels like I’ve been engaged in a weird kind of academic performance art.'' :joy:

Yes it is. I use various forms and have had no problems recently. Though at times in the past the pharmacist has had to shop around to source it.

@Tom Kindlon It would be reporting the therapist and their potential unethical behaviour, not the type of therapy itself.

Excellent, thanks @Graham!

He was also involved in the initial fundraising campaign of Canary in a Coal Mine (aka Unrest) back in 2013.