Negativity

[Leesaloo]

To all who have took the time to read what I was trying to say, thank you, I was responding to the dis respectful continuous answers on FND, it is an umbrella for the daily, yearly symptoms of FND. I enjoy reading different views from different people all around the world, when I hit rock bottom and I have before some of the things people write give me hope. Without hope we have nothing. I really don’t need to read about cults, where I should not move too. I can’t see how this mind set can help anyone suffering especially for those who write about cults etc. We all need advice at times, it’s great if someone understands exactly what your trying to say as with brain fog it’s damned hard to get how your feeling across. Just hope everyone can find empathy for all of us suffering and drop the cult view at least. Hugs to all and empathy to all.

[Gypsi]

I don't know what you are referring to when you (and others) talk of cults. Can you point me to the relevant post? I live in Scotland and have come in contact with Jon Stone who however was not helpful at all.

[Leesaloo in reply to Gypsi]

Hi, I’m not happy to point out the relevant posts, as I wrote earlier anyone can follow others on here if they would like too. This would just carry on negativity which is not what anyone wants. I can only speak from my own experience like others. Professor Edwards was a godsend for me, I honestly thought I was dying. Now I know seizures won’t kill me, my partner knows not to try and bring me out of them, I know and appreciate FND is an umbrella form for unexplainable neurological symptoms and this website is a godsend for me. Thank you for taking time to answer me.

[Mic67]

I'd just like to say that personally, I have never said anything about professionals being cult leaders etc and I don't think that.

What I have said could be construed as cult-like is the inference that members must believe exactly the same way, with no room for disagreement or questioning.

[Leesaloo in reply to Mic67]

Hi, there is always room for disagreement, questions but in a way that helps people who are so genuinely ill. It’s great to have information about all the illnesses there are. I love reading discussions on here but felt I had to say some discussions were becoming derogatory. We are all ill, some housebound, some just struggling to get through the day. We all just need someone to take notice of us and say I’m there with you I’m here whenever you need me. Just someone to care and acknowledge what we go through.

[lily82 in reply to Mic67]

I think the 'cult' comments have been misinterpreted.

Like Nic says, it's just a way to describe the inference that people must agree and believe in the diagnosis.

Also, most of the people posting 'negative' comments, are those in the process or who have been diagnosed with FND. They deserve a place to discuss and question and vent.

If you don't like what they write, just don't read it?

[Gypsi in reply to lily82]

Hear hear! One hundred per cent Lily82. If you can express one kind of views here, surely you can express others? It's called freedom of speech. Also, I read most things posted on here I have absolutely not seen any reason for Lisaloo to be so unhappy. I have great doubts about this diagnosis and it is borne out by experience.

Best to All, G.

[Tewa]

Hugs & empathy to you too!

[1fnd Partner FND Hope Volunteer]

Leesaloo,

Thank you for your post. Others feel the same as you.

If you do not agree with posts such as this one, then ignore the post please. Leesaloo and no one else should have to defend why they don't want negativity. If you want to discuss your disbelief in the diagnosis then start your own thread so those who do not want to take part don't have to.

Admins will start to suspending people from posting if they continue to hijack other peoples posts to further their own agendas. As an organization we support everyone at every stage of the diagnostic process and we expect our members to do the same.