Search results

Ok, at least it's becoming clear Class Action isn't likely to be feasible and perhaps for now individual cases are a better route. I'm sure more people will add to the thread with their knowledge.

In this post, @ToneAl linked to a site that I thought was interesting. Professor Gavin Giovannini, MS specialist, discusses medical gaslighting. He explains patients with MS regularly have their hard-to-deal-with symptoms dismissed. He also mentions that the same is happening with people with...

I do not want to comment on anyone's sanity but there is mention about financial ties to Bill Gates which IMO sounds like a conspiracy theory..... I didn't see that. The vaccine fund discussion is of interest though because I have heard some people attribute ME-like illnesses as a result of...

I think that's the benefit of a streaming service like Netflix as opposed to Panorama - which I do think has immense value if it can be navigated correctly.

I was thinking in terms of what @Hutan proposed. Although, admittedly, I haven't watched "Afflicted." I was thinking something more like an informative docu-show that isn't directly focused on the lives of people with post-viral illnesses.

I like this idea. Netflix has a wide audience, and people at Netflix and similar likely know someone suffering from LC if they are not suffering from it themselves. Sometimes Netflix shows generate a lot of media interest, but I guess that comes down to how attention-grabbing it is. This is a...

Check out this post. It's recognised that some people develop severe medical complications directly linked to COVID-19 vaccines. In some cases, people died. A vaccine damage fund has been extended to cover covid-19 vaccines...

Study finds no increased risk of rare neurological events after covid vaccination https://www.bmj.com/company/newsroom/study-finds-no-increased-risk-of-rare-neurological-events-after-covid-vaccination/ Vaccine Damage Payments Act 1979...

Many people are misdiagnosed so why can’t the same be the case for people with FND?

Thanks for your input @CRG. Like I said, I am not sure how feasible any case would be, so your explanation and input from others are useful in understanding what kind of advocacy is practical. I struggle to understand that nothing likely can be done so far and that no one can be held...

We are grouped here on this forum, but many more people are out there confused by their medical treatment. When the new guideline draft was published and subsequently delayed, I contacted NICE directly to inform them I've been treated and accused of having a mental health condition because of...

I think everything needs investigation, if possible, from the decision-making of the 2007 guideline, PACE trials, withholding the trial data, clinical care, the inner workings of fatigue clinics, the new guideline interference and post-patient treatment. None of these things seem to uphold the...

Threw me off too.

Recent discussions about engaging Panorama and Dispatchers and the failed previous attempts discussed on this thread https://www.s4me.info/threads/pitching-to-panorama-efforts-to-commission-a-documentary-on-nice-guideline-bad-science-pace-etc-and-patient-harm.33997/ has made me want to open a...

Thanks for trying to get the story across.

I agree with @EndME, @dave30th and @Trish plus I’m taking heed of the recent events @dratalanta has mentioned. The fact that NICE had to bend to these people says a lot. Not to hijack this thread but at this stage, I'm wondering if what people also want to achieve is what happened with group...

This question was similarly raised here recently https://www.s4me.info/threads/functional-neurological-disorder-fnd-articles-social-media-and-discussion.23802/page-15#post-481648 @DigitalDrifter posted a meta-analysis/review published in the journal titled Brain, which includes brain imaging as...

I hope so, but something tells me the researchers will just claim FND has the biological underpinnings viewed with imaging, but their reverse engineering clinical evidence shows it responds to CBT. Suggesting illness is driven more by mental problems than a result of any abnormalities found. At...

So he wants to exhaust and trick people into accepting living with debilitating symptoms without expensive health-stabilising treatment?

Patients with ME and LC have even had their medically observed abnormal high heart rate blamed on deconditioning plus anxiety despite reporting symptoms following infection. I’ve yet to hear of a recent NHS doctor/consultant who has followed “We mount a response to a virus and the nervous system...