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7. I believe the consent process was unethical. I was not aware what I was letting myself in for. (they did not explain the details of the intervention until after I had consented). In addition, the

deconditioning theory was presented as fact and there was no mention of a balanced viewpoint

(I have since read research that goes against this deconditioning theory).

8. Another example of my data not being represented properly: I suspended from University a couple of weeks before the start of the program and had started to improve from the rest. I

continued to improve for a little while into the program. I made sure I highlighted that the cause of this improvement could be the effects of the program, or the rest I was getting. They were not interested in this - the fact that there was basically another aspect of my life that could be causing changes in my condition.

 

I was unhappy during the study but wanted to continue because I thought (stupidly) that in some small way I was helping the fight against ME. It is in realising that my data will probably be used in some way to support this program - that I feel made me so much worse - that makes me want to withdraw.

Blimey, I have written all this and still don't feel like I've painted the picture.
The doctor put me forward for this trial because this was all he knew of to do. I so wish I had done my research first. I will be so much more cautious in the future.

It frightens me to think that this research will be used to support clinics offering this in the

future.
Anyway, I hope that is of help to someone. I can provide more information if anyone is interested.
Thanks for your replies and I hope this is a good day for you.

Alice x

We would like to say a heartfelt ‘Thank You’  to Margaret Howitt  for all her hard work and support over the last few years.  It could not have been easy with a husband and two sons each suffering from ME.

The family have improved and Margaret has gone

 back into nursing.

Though; she has said we will still see her around

And she will try to make it to some of our meetings.

After the training courses Margaret will be going on

She hopes to be able to return and help out with the

Network.

 

We wish you all the best in your Career.

 

This is an extract from an article on the ‘INVEST in ME’ web site.