How do we get Dr Nigel Speight's petition restored?

Countrygirl

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I read a few hours ago on PR that someone claimed that Dr Nigel has requested that the petition be taken down. I just want to reassure everyone that this is not true, but the petition is already locked if not actually removed.

Dr NS and others emailed me an hour ago to ask why the petition is now unavailable. He is perfectly happy with it and the rumour that has been spread is false.

It would be good to see the petition restored.

Best wishes,

CG.
 
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I was about to sign it when I read the post that we had been asked not to so I didn't......

As you say a misunderstanding ... or a new low...
 

Sasha

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Dirty Trix been at work again?
@Chrisb Ummmmm! Quite!.......or it could be an innocent misunderstanding............ and there again................
This certainly hasn't been dirty tricks. It was taken down because of what Dr Speight himself had said about not wanting a petition:

JaimeS said:
Thank you, Bob. I've removed the petition from #MEAction. I'm sorry to the person who posted it, but we spoke with the Dr and he specifically asked us at #MEAction not to do this.

I apologize to the people who signed, as well.

However, let's wait and see what the doctor needs before we act.

Jaime

@Countrygirl, please give @JaimeS time to wake up in the US so that she can see your new information from Dr Speight. :)
 
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tinacarroll27

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I want to apologies to Dr Speight, #MEaction and everyone who signed the petition. I was the one who put the petition up and I didn't realise It was still involved in legal action and I should have realised. Apologies for any worry I might have caused with the petition to Dr Speight, it was never my intention. My actions came from a desire to help. I apologies to #MEaction for wasting their time and I apologies to everyone else who signed it for wasting their time. I am new to all of this advocating and I still have a lot to learn. Thank you
 

Sasha

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I want to apologies to Dr Speight, #MEaction and everyone who signed the petition. I was the one who put the petition up and I didn't realise It was still involved in legal action and I should have realised. Apologies for any worry I might have caused with the petition to Dr Speight, it was never my intention. My actions came from a desire to help. I apologies to #MEaction for wasting their time and I apologies to everyone else who signed it for wasting their time. I am new to all of this advocating and I still have a lot to learn. Thank you
I'm sure everyone understands that you just wanted to help!

But as you say, this is all a bit delicate and we need to tread carefully. :thumbsup:
 

Countrygirl

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I want to apologies to Dr Speight, #MEaction and everyone who signed the petition. I was the one who put the petition up and I didn't realise It was still involved in legal action and I should have realised. Apologies for any worry I might have caused with the petition to Dr Speight, it was never my intention. My actions came from a desire to help. I apologies to #MEaction for wasting their time and I apologies to everyone else who signed it for wasting their time. I am new to all of this advocating and I still have a lot to learn. Thank you
@tinacarroll27 You have nothing to apologise for and Dr NS is happy with the petition. Why don't you contact him and ask him yourself? He will reassure you. Please may we have it put back up again. If you or MEAction have 'spoken' to him as stated earlier you have his email address.

Well done for starting it.

Best wishes,

CG
 

JoanDublin

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I want to apologies to Dr Speight, #MEaction and everyone who signed the petition. I was the one who put the petition up and I didn't realise It was still involved in legal action and I should have realised. Apologies for any worry I might have caused with the petition to Dr Speight, it was never my intention. My actions came from a desire to help. I apologies to #MEaction for wasting their time and I apologies to everyone else who signed it for wasting their time. I am new to all of this advocating and I still have a lot to learn. Thank you
I was one person who was worried about the petition. I know it was done for the best of intentions and now that he is happy for it to stay up, could you reinstate it? If that's not possible could you start another one? I think this was all just confusion from remarks made earlier by an intermediary who said not to do anything unless NS was happy with it. Don't think it was any dirty tricks, just genuine confusion and concern,.
 

Countrygirl

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I was one person who was worried about the petition. I know it was done for the best of intentions and now that he is happy for it to stay up, could you reinstate it? If that's not possible could you start another one? I think this was all just confusion from remarks made earlier by an intermediary who said not to do anything unless NS was happy with it. Don't think it was any dirty tricks, just genuine confusion and concern,.
I think everyone is trying to do their best to support Dr NS and are genuinely concerned not to exacerbate the situation. I hope when wires have become uncrossed that the petition will up again before too long.

Again very well done @tinacarroll27 for taking the initiative.

Best wishes,

CG
 

JoanDublin

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And I would like to apologise for my role in the confusion. I was one
I think everyone is trying to do their best to support Dr NS and are genuinely concerned not to exacerbate the situation. I hope when wires have become uncrossed that the petition will up again before too long.

Again very well done @tinacarroll27 for taking the initiative.

Best wishes,

CG
Thanks. I feel bad for my role in the confusion but like you say, it was genuine concern shared by a few people. Can't wait for the petition to start up again! @tinacarroll27
 

Countrygirl

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What's going on here?






Change of mind? Confusion? I don't understand it.
I think it is merely confusion @esther.

Some while ago, Dr NS made it known that he didn't want a petition to be put up 'yet'. That was before the interim hearing. However, he is perfectly happy for patients to support him now and certainly by this petition.

I have been in contact with him a number of times today after he tried to see the petition and found it removed and was concerned to know why this has happened. I think people are just anxious not to take any action to inflame the situation and somewhere along the line wires have become crossed.

Hopefully, it will be restored within the next few hours when people realised that there has been a misunderstanding.
 

JaimeS

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I read a few hours ago on PR that someone claimed that Dr Nigel has requested that the petition be taken down. I just want to reassure everyone that this is not true, but the petition is already locked if not actually removed.

Dr NS and others emailed me an hour ago to ask why the petition is now unavailable. He is perfectly happy with it and the rumour that has been spread is false.

It would be good to see the petition restored.

Best wishes,

CG.
I never said that the doctor had requested that particular petition had to be taken down! I stated that the doctor had said to #MEAction that he did not want any petitions or patient intervention. I just sent him a second email asking if that had changed.

@tinacarroll27 -- thank you! It's really all right. :)

You guys know me. Unless I've been hanging out for a year pretending to be ill ('malingering'!) this is not some conspiracy. It's us getting our wires crossed. If Dr Speight has changed his mind, we are happy to host the petition, and happy to put one up on #MEAction's main page if we know what he wants us to ask for.

Another thing I had spoken to the doctor about was what form he wanted our support to take. Hopefully he'll respond soon, and we'll see.

Thanks to everyone here. Even though this was a bit of a stressful situation, I know that everyone in our community wants to do good, and that's so apparent every time I'm here.

Jaime
 

JaimeS

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Here are the exchanges I've had with the doctor himself, as of 10:30 AM EST, 4/29/2016:

Dr Speight,

Some PWME are stating that you have said you're happy to have them create petitions on your behalf. We took down a petition yesterday because of the wishes you conveyed earlier. Please let me know if this has changed.

Thanks,

Jaime


He replied,

Sorry about the confusion

I did indeed say postpone question of petition a few days/week ago, then when it took off after last week's ruling I though why not let it rip?

I am now reluctantly (after discussion with lawyer) back to initial position
Thanks

Wish me luck
I replied,

So, to clarify, you prefer to avoid petitions and the like? Do I have your permission to quote you on this?

The community is a bit puzzled right now. We all want so badly to help you, of course. :)


And he answered,

For the time being at least.... my legal advice is against [doing petitions and campaigning]
From the last response, I removed a few things I thought are best kept private.

Jaime
 

Countrygirl

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I have been away from my computer for a few hours and have returned to see some emails from NS after speaking to his lawyers who have advised that it is not wise to continue with the petition. What a shame as I suspect it would have received a huge response. As ChrisB says, at least he knows we all wish him the very best.

@JaimeS I am so glad wires have been uncrossed. Everyone is trying to do their best with conflicting information.

Best wishes,

CG