FND Awareness month

[Lady4]

#fndawareness

I just clicked on this and there are over 27k posts so far on Instagram, I really hope things change.

[Poseypink]

Seems like there is momentum building

[Lady4 in reply to Poseypink]

They need to do something, when I hear people's battles, it breaks my heart.

[210272]

Do you know if the role of co-chairing the patient panel at the next FND Society meeting was offered to any female advocates before FND Portal took it on? Hell of a slap in the face to the FND feminists if he took it on without it being offered to women first.

[Crypto127 in reply to 210272]

Be refreshing if patient advocates were proactive in the direction of what needs researched, rather than passive accepters of what the medical profession decides is the received wisdom. As I recall in his long essay on the history of FND, FND Portal felt the need to reassess his early life experiences to find them traumatic. Why? We do exist - those with FND for whom trauma has nothing to do with the development of disabling symptoms. Trauma existing in tandem does not make it causative or exacerbating. It simply exists in tandem. Until we break this incessant need to ascribe some element of the psychological to FND we will never conquer it.

[Lady4 in reply to 210272]

A bit naive here, whats the FND portal?

[210272 in reply to Lady4]

FND Portal is a bloke with FND who likes to be anonymous and if he took on the role of co-chairing the patient panel at the next FND Society meeting without that role being offered to women first, I have lost all respect for him.

[Lady4 in reply to 210272]

So does he have his own blog?

[210272 in reply to Lady4]

I don't know if he blogs but he does tweet a lot and wrote this:

Cadenza for Fractured Consciousness: A Personal History ...

Medium · Fnd Portal

210+ likes · 1 year ago

He quotes Bridget Mildon who was initially misdiagnosed with FND before receiving her diagnosis of a rare condition called Sneddon's Disease (I think). She reads things into my emails that aren't there and thinks that me commenting as a patient is worse than what doctors do, for reasons I can't understand. However I like her writing (Turning Patients Into Numbers via MadInAmerica) so will email her again when I get a moment (hahaha) since apparently she's an expert in the FND Subtypes now. Not that I've heard a peep out of her about all the controversies surrounding PPPD so maybe she didn't get sent (or see) all the tweets I was sent about it.

[Lady4 in reply to 210272]

Strange, is that referring to him having correspondence with Bridget? Went totally over my head.

[210272 in reply to Lady4]

He quotes what she's said about FND as if she is an authority on this condition. She's an advocate for people with it but has not experienced it herself and her grasp on the controversies surrounding the so called subtypes is weak.

As for what happened to me at the sleep clinic; it was horrid at the time but the underhand way she went about trying to prevent me from having any more tests (while offering me others) alerted me to the underhand ways this diagnosis can be given and the problems it causes for people with rare conditions.

With MdDS things are good since there's a paper out from the Antwerp researchers, some of whom I know, about the standardised treatment for it. On the other hand things are not so good because Prof Staab (one of the founders of the FND Society) believes that everyone with MdDS has FND and therefore needs a DSM label. Hmm. It's not a good look for him since we're mostly women, there's no scientific rationale for his way of thinking and it is also potentially harmful when it comes to our recovery prospects.

[Lady4 in reply to 210272]

Did you mean while offering them to others? Or she stopped you from having certain tests?

[210272 in reply to Lady4]

Ah, just responded to this in another thread but forgot to say that she took a highly controlling interest in my MRI results, even though she knew they would be normal in advance. The worst thing she did was to lie to me that I was getting a 'copy' of her letter when, in fact, the version I got had a whole paragraph missing compared to the one sent to my (then) doctors. The hospital trust then kept changing their story about why that had happened but it is systemic in that there will be other people who have incomplete clinic letters, without being aware of it. I only found out due to clerical error when I asked for my notes to be sent electronically.

Completely agree with your comments about the DSM label and I think it breaches human rights regarding access to effective healthcare.

[Lady4 in reply to 210272]

I also noticed that the letter to the GP from Paeds was diff to ours (thats how PT new possible FND and I hadn't a clue until she mentioned it). Think I mentioned that to you before, its all wrong though, what you tell your patient should be the same as what you tell their GP!

[210272 in reply to Lady4]

This is what concerns me - if we only find out about the diagnosis via others who have been sent different information than we have, it becomes hard to trust that the diagnosis is accurate. A badly given FND dx nearly always causes iatrogenic harm, as we know.

[Lady4 in reply to 210272]

Its sad that having an FND label (DSM) means not being given help in a timely manner. If given early support, so many lives would be so different now.

[Shimmyaway]

Paxman has delivered his Parky Charter to no. 10, ..and they are better catered for than we are, so maybe we need to find a 'Paxman' with FND to be our public face ,,but where from?

[Lady4 in reply to Shimmyaway]

Whose Paxman?

[210272 in reply to Shimmyaway]

FND Hope UK organised a parliamentary event fairly recently (I think it happened last year) and I wish I'd known about it in advance since I could have gone along to represent all the people - mostly women - with rare conditions who have been initially misdiagnosed with FND *and* the people deemed to be in the FND Subsets IE those labelled with PPPD. Which is a 'human construct' constructed by men who are all heavily invested in FND *sigh*.

[Shimmyaway]

Jeremy Paxman, (ex BBC) who together with Mark Mardell, Rory Cellan Jones, and other high profile Parky sufferers, have formed The Movers and Shakers 'gang' to produce podcasts on youtube, to highlight how Parkinson's has affected their lives...and what services are needed for all Parky sufferers.

[Lady4 in reply to Shimmyaway]

Got you. There has got to be someone famous with FND for sure.

[Shimmyaway]

Just found this on autism in my senco forum inbox..its current. Did not include the web address, as it was labelled 'suspicious'.

Funding for autism in secondary schools

£5,000 awards available – supporting autistic students’ mental health and well-being

Sheila Coates Foundation has launched a £500,000 funding round to support the mental health and well-being of autistic young people in mainstream secondary and college education in England.

The funding is to support short term solutions that can be put in place immediately. More information can be found here