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‘Excluded’, ‘stigmatised’ and ‘feeling inadequate’

European study highlights the negative treatment faced by majority of people with neurological disorders.



More than nine in 10 people with a neurological disorder face stigma because of their condition, mostly from medical professionals, according to a study.

The survey, by the organisation that represents European organisations across neurological diseases, suggests that most of this stigma comes from medical professionals who don’t appear to believe patients’ symptoms.

The 1,300+ respondents to the European Federation of Neurological Association’s (EFNA) poll had a range of disorders including ME, migraine or headaches, epilepsy, Parkinson’s and chronic pain.

Around 75 per cent of people reported feeling as though they didn’t receive adequate treatment because a medical professional didn’t take them seriously, while just over a third avoided seeking medical advice because they felt embarrassed.

The paper states: “Given the importance of early intervention in many of these conditions we can see that stigma poses a risk to people’s health outcome.”

At work, almost one in five say their manager didn’t respond in a positive or helpful way when they disclosed their disorder, while a third say relationships with colleagues were negatively affected after disclosing their disorder.

Respondents also reported that their social and family life is affected by people who misunderstand their conditions.

Almost a third said their family don’t understand the consequences of their condition, while half said their families sometimes make them feel like they’re exaggerating their condition and a third of respondents with children have been made to feel like inadequate parents.

Two thirds of respondents missed out on a social event in the two weeks prior to the survey because of their condition, while a third felt excluded because of their condition.

Almost half of those who had a neurological disorder in childhood found it difficult to make or maintain friendships at school, and the same number were left out of school events because of their condition.

People with invisible symptoms reported experiencing the most stigma overall, while a third say they are made to feel like their disorder is their fault.

“From these results,’ the study states, ‘We can see that the need for increased understanding is clear.”

The EFNA plans to carry out further research and put together a statement of how it plans to address the challenge of stigma.

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The psychiatrist fighting for domestic violence victims



Australia’s New South Wales government has promised to improve brain injury testing for domestic abuse victims after a psychiatrist drew attention to inconsistent care for vulnerable women. Psychiatrist Karen Williams urged the government to adopt a concussion protocol for family and domestic violence victims after doing her own research and being shocked at what she found.

It started when Williams noticed the disparity in how her patients were diagnosed and treated.Williams specialises in the treatment of post-traumatic stress disorders (PTSD), often with military, police, emergency personnel and other first responders.

But she also treats the general population, the vast majority of whom are women with histories of child and domestic abuse.

“I was getting two populations,” she tells NR Times. “The military patients, who are clearly identified as having PTSD, and the female population, who are mostly identified as having depression, anxiety and personality disorders, but had incredibly high rates of abuse in their histories.But Williams saw that whilst both groups had similar symptoms, and similar levels of trauma, they had very different treatment options.

“There’s a lot more funding put into supporting traumatised soldiers and first responders than there is for women who have experienced trauma within their home.

“In Australia, we don’t have much at all for women and children victims of abuse.”

This was a particular concern because of the amount of times Williams had heard about multiple head injuries and concussion among women who were victims of domestic abuse, which is similar to boxers and those player high contact sports.

“Women who’ve been unconscious several times or strangled have symptoms such as memory deficits, insomnia, migraine and mood swings, which all could be put down to PTSD and depression, but also brain injuries.”

But if Williams wanted to find out if a patient had a history of brain injuries, she would have to refer them for neuropsychiatric testing, which costs up to AUS$1000.

“This is completely unaffordable for many abuse victims so it just doesn’t happen, so we don’t investigate women who’ve had brain injuries.

“One brain injury unit told me they would consider taking on a patient if they could provide evidence that an assault happened – such as hospital records.

“This completely fails to take into account that the vast majority of domestic violence survivors will not report any assault to anyone and will not have so-called evidence.”

Then, Williams was speaking to a colleague whose son had had a head injury in a sporting field.

While they were together, a nurse rang to follow up the treatment he’d received in the emergency department.

“The nurse asked how her son’s personality and memory was, and gave a fantastic run-down of the symptoms that can happen after a concussion,” Williams says.

Williams was shocked – she’d never heard of someone ringing up women after a head injury in a domestic violence case.

She rang the local emergency department and asked about their protocol following a head injury obtained during sport.

She was given a detailed outline of the observations they take, their plan over the weeks following the patient’s injury and the advice they give the patient.

Williams called several emergency departments in other Australian states, and whilst all had a protocol for sports players following a concussion, none said they had a protocol for women who had been the victim of domestic abuse.

“There wasn’t one place that said they had a particular protocol.

“If they knew the woman had had a head injury they’d give them the basic head injury protocol, but nothing specific that took into account the very individual needs that a woman with a head injury in a domestic situation might have,” she says.

Williams says research indicates health care professionals correctly identify family violence victims about one per cent of the time.

“In sporting players’ protocol, there’s a recognition that says that your patient may not know what they’ve experienced in the past was a head injury, so the advice is to be really explicit. They’re given a list of questions to break it down with that player to make sure they understand what could be a head injury.

“There is opportunity for scanning, and neuropsychological testing if there is evidence of persistent symptoms.”

Williams says doctors should be going through the history of women, too, to see if they’ve lost consciousness in the past.

“There are a variety of mechanisms in which a woman experiences brain injuries in a domestic situation, many more than sporting probably, and the more head injuries a woman has, the greater her chance of long-term problems,” Williams says.

This includes a higher risk dementia, PTSD, migraines, learning problems and memory problems.

“But women aren’t told this, so many don’t know that they’re at risk of these things.”

Williams says there is a ’hidden epidemic’ of women in the community with brain injuries no one knows about, who could have been diagnosed with mental health issues instead.

In 2018, Brain Injury Australia released its findings after looking at the prevalence of brain injury in victims of domestic violence.

It found that 40 per cent of victims who attended hospitals in Victoria, Australia, for domestic violence had a brain injury and the majority were women.

But there’s no specific treatment for these women, Williams says, and many won’t even know they have a brain injury.

“Abused women are a very neglected population, and when you think about the money being spent on sports, and sports players, there’s no reason we can’t look after woman as well,” Williams says.

But despite these findings, Williams says it didn’t lead to any change.

“When I found all this out, I was angry and upset,” Williams says.

She arranged to meet New South Wales’s Labour MP Anna Watson in August, and when Williams told her what she’d found, she says Watson was ‘mortified’.

“She immediately got on the phone with the office of the minister for the prevention of domestic violence, and requested a meeting as soon as possible.

In the Zoom meeting a month later, Williams went over what she had found with Mark Speakman, Attorney General and Minister for the Prevention of Domestic Violence, and outlined the obstacles facing women.

But he made no promises, and Williams said she felt he didn’t understand the urgency or gravity of the situation.

Watson then went to the media, and the story was reported on. Within a week, the government produced a statement promising to investigate the issue.

“We’ll all be watching and holding them accountable,” Williams says.

“I will be trying to follow up, I won’t let it go.”

Williams is disheartened that it took media coverage to get the government to respond, but says she’s learnt a valuable lesson.

“Part of the reason I’ve spoken to the media and been vocal about it, is my experience is that when we do things quietly and ask for things politely, the government says there’s no money, despite being one of the wealthiest countries in the world. But when the voting population starts getting angry and asking what’s going on, that’s when we see an answer.

“It’s been a sad realisation for me to recognise that people don’t respond to do the right thing, they respond to winning the vote, so I will keep being as loud as possible in the media.”

Leaving brain injuries undiagnosed has significant consequences, Williams says.

“You’ve got women feeling like they’re a bit crazy, women wondering, ‘Why don’t I remember things, why have I got headaches all the time, why can’t I sleep?’

“It makes women feel worse, like something is wrong with them rather than identifying the underlying cause that we’re completely missing.

“If women are unable to work due to the physical and psychological side effects of a recurrent head injury, they need to be able to apply for NDIS funding (National Disability Insurance Agency). f they don’t know they have a brain injury they will be left to flounder – which is what is happening now.

“The vast majority of doctors don’t know about this. The medical system failing these women.”

There will be a lot to work out as support becomes available, Williams says, as some women could fear that having brain injury diagnosis could interfere with them getting custody of their children.

But, ultimately, change will benefit these women.

“All women deserve to know the truth about what’s happening to them,” she says.

“In some cases, their brain injury will be the final straw. They might think an act of violence isn’t a big deal, but if a doctor says, ‘Look how many times this has happened to you, you could end up long term brain damage’, that might be the final push that makes her take steps to leave. There’s no excuses to justify why these conversations aren’t had.”

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Groundbreaking research finds two different types of Parkinson’s



There are two types of Parkinson’s disease, and each may require different treatment, a leading Parkinson’s researcher has found.

It’s long been understood that the disease could start in the nervous system of the gut and spread to the brain via the vagus nerve.

But Per Borghammer, professor and consultant of nuclear medicine at Aarhus University Hospital in Denmark, says there is another way Parkinson’s starts.

Over the last six years, Borghammer has explored this theory.

“Our previous studies support that this gut-start idea could be right. In short, that Parkinson’s starts in the gut and spreads through the brain via the vagus nerve,” he says.

In one Danish study, and a similar Swedish study that later reproduced their results, Borghammer found out that patients who had their vagus nerve cut showed a 50 per cent reduced risk of developing Parkinson’s.

“This finding makes sense, since patients with a surgically severed vagus nerve should be protected against Parkinson’s because the main gut-to-brain spreading highway is no longer there,” he says.

However, the risk reduction was only 50 per cent. This This led him to wonder – what about the other 50 per cent?

Borghammer knew that all Parkinson’s cases probably didn’t start in the gut, because scans show that, in some early-stage Parkinson patients, their nerves to the heart and gut are damaged, but in others they’re not.

“I wanted to design a study that showed that the right way to think about Parkinson’s is that it can start in the gut and move to the brain, but it can also start in the brain and move down through the brain stem into the peripheral nervous system.”

This would mean that, in both group of people, the disease eventually looks the same – but in the early stages it looks completely different.

The motor symptoms of Parkinson’s disease only become apparent when the dopamine system is damaged – which would probably occur much earlier if the disease starts in the brain, not the gut. “The body-first disease seems to be the worst one,” Borghammer says.

“It has the poorest prognosis and these patients have a larger symptom burden than those where it starts in the brain. In body-first patients, you see a lot of early symptoms from the damaged peripheral nervous system.”

Such patients will experience symptoms including constipation, sexual dysfunction and orthostatic hypertension.

And when the disease has advanced far enough it will reach the middle of the brain stem, giving rise to REM sleep behaviour disorder.

“This particular sleep disorder often have a detrimental effect on patients’ quality of life,” Borghammer says.

Normally, when we enter REM sleep, which is when we dream, the body is paralysed. But in the fraction of Parkinson’s patients who develop the sleep disorder, Borghammer says, this paralysis stops working and the person will thrash around in the night.

“We know that patients who get the sleep disorder early will progress through cognitive decline and dementia faster than other patients. We don’t know exactly why, but statistically, that’s a fact.”

In Borghammer’s latest study, he set out to see if there were two types of the disease – a brain-first and body-first.

The first starts in the brain and spreads to the peripheral autonomic nervous system, and the second starts in the peripheral autonomic nervous system and spreads to the brain via the vagus nerve.

In the body-first type of Parkinson’s, he says, the disease damages the heart and gut early, then spreads to the brain stem, where at which time the patient will get the Parkinson’s diagnosis.

“In the brain first subtype, the pathology starts inside the brain, probably most often in the amygdala, where it’s clinically silent and the person doesn’t know there’s anything wrong.

“From there, it spreads in all directions, into the dopamine system, down through the brainstem and eventually into the peripheral nerves, which likely takes five to 10 years.”

It’s too early to know the implications of this, he says, but it’s likely the type types of Parkinson’s should be treated differently.

He urges researchers looking into Parkinson’s to consider these findings.

“If we want to cure the disease, and eventually prevent it, we likely need two different strategies,” he says.

“One tailored to the body-first and one for the brain-first types.”

In recent years there has been a huge increase in studies looking at the gut microbiome.

It’s likely that, if the gut can give someone Parkinson’s, this will result in the body-first type, Borghammer says.

For example, there are several studies currently looking at faecal transplants, which Borghammer guesses will help more in body-first patients of Parkinson’s.

“This is important knowledge, because studies might benefit from including only body-first patients, but that’s not what’s being done. All Parkinson’s patients are put into one big pot.”

But, he says, there needs to be focus on both types of the disease.

If it turns out that certain bacteria in the gut put people at a higher risk of developing Parkinson’s, for example, Borghammer says in an ideal world there would be efforts to ensure people don’t have these bacteria.

But this might only prevent body-first Parkinson’s. Borghammer plans to double the number of patients and repeat the study again on a larger scale, and hopes other researchers will replicate his research in other countries.

“Hopefully the entire field will realise there are these two different types of patients. We’ve shown how they can be identified. If we’re lucky, maybe we can discover the genetic risk factor that predisposes people to the gut-first or brain-first Parkinson’s.”

Lastly, Borghammer clarifies that not all Parkinson’s patients will necessarily fall into one of the two groups, and there could be rare cases that fall outside of these two main categories.

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Interview: Inside one of the world’s biggest concussion studies



Concussion is a huge concern across the US military and in sports. In 2018, 19,000 military personnel were diagnosed with a traumatic brain injury, while college athletes had an average of 10,500 concussions for past five years.

Despite the numbers, many say there’s a lack of research to inform ways that government and industry can best tackle this problem.

In response, the largest prospective concussion study was formed to fill the gaps in understanding, to see what recovery from a concussion looks like in athletes and cadets.

More than 44,000 people have since enrolled in the CARE (concussion assessment, research and education) consortium since its inception in 2014, across 30 universities and four military service academies across the US.

It has so far captured data on more than 4,300 concussions. The study is funded by the National Collegiate Athletic Association (NCAA) and the Department of Defence.

It’s believed that NCAA athletes represent the best model for what happens with concussion in the military.

Researchers involved in the study hope their findings will allow them to predict what happens to people after a concussion; information which can then help inform protocols that could become the standard for universities and the military.

Steve Broglio, associate professor at the University of Michigan’s School of Kinesiology and departments of neurology and physical medicine and rehabilitation, and one of the project’s leaders, says the initial aim was to be able to define the acute history of concussion, and see what happens to people after they have a concussion, establishing both a clinical arm and a research arm.

“In the first days of the project, we enrolled 35,000 civilian athletes and military service cadets to try to understand what was going on,” he says.

“We captured this by understanding their clinical natural history,” such as if they went to the doctor about their symptoms.

“The second arm of the project was to understand what’s going on a biological level, using genetics and biomarkers and advanced imaging, to see if recovery on a biological level reflects the medical level,” Broglio says.

In 2018, the team moved on to the second phase of the project, which was to understand the persistent and long-term effects of concussion.

“We continued to enrol people and we now have 55,000 participants. Each one receives a baseline exam when they enter institutions,” Broglio says.

“The second phase is now starting to get exit data as gradates do another evaluation to see if their concussion has had any effect on their brain functioning.

“In parallel, we’re also reaching out to people who graduated from intuitions, so they can do online evaluations to see if the long-term reflects just after they graduated, and within the first five years of gradation. The goal now is to start tracking people for their whole life to see the trajectory, and to see what percentage of people have issues,” he says.

Thanks to its findings so far, the consortium has participated in setting the concussion policy for the NCA, which outlines how concussions are managed, Broglio says.

So far, CARE has published around 60 papers relating to various findings, and Broglio says some of the consortium’s findings have had more impact than others.

In general, he says, findings that chime with a wider body of research that came to the same conclusions are more likely to help enact changes in policy because they will carry more weight.

“Some of what we’ve found doesn’t match what other people have found, some things have been consistent with other studies. When it matches, we can say, ‘Right, we need to change something’,” he says. This research is unlike any other, he says, partly because of how far-reaching it is.

“We were interested in getting a broad understanding of what’s going on across all cohorts. The very first goal is to understand the natural history of concussions, and the recovery rate of athletes and cadets participating in multiple levels and across different sports and different sexes.

“Prior to the project, most of the literature focused on male contact collision sport athletes, such as American football, maybe ice hockey and lacrosse. We have close to 50 per cent women in the study, across every NCA sport.”

These sports include basketball, baseball, ice hockey, water polo and cross country. The areas with the most reported concussions, according to the NCAA, are women’s soccer, football, ice hockey and wrestling.CARE’s most recent research, which is yet unpublished, shows that there are different recovery rates based on the sport.

“No one has ever shown this,” Broglio says.“There’s almost an identical recovery rate between men and women that hasn’t been found before, and which we didn’t anticipate. It’s largely been recorded that women take longer to recover, but when matched with equivalent sports, men and women’s recovery rates are virtually identical, which is a pretty significant finding.

“We’ve also had a series of papers looking at the cognitive performance of contact athletes relative to non-contact. They perform the same, if not better. This, he says, runs counter to the school of thought that repeated blows to the head causes chronic traumatic encephalopathy, a neurodegenerative disease which causes severe and irreparable brain damage.”

Some of those things are different to what’s been previously reported, which also opens the door for more research and conversation,” he says.

As well as research, the project is also focused on education for athletes, trainers, coaches and families.

Funding for CARE expires in one yea, and the consortium is in the process of submitting for the next five-year cycle.

“We could be around for as short as 12 months, or it could be another five years. Ideally, it would be another 50 years, so we can track participants,” he says.

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