How cognitive behavioural therapy can tackle fatigue in MS

In a study of commonly used treatments for people with multiple sclerosis (MS), both medical and behavioural interventions, and a combination of the two, resulted in meaningful improvements in fatigue.

The randomised clinical trial compared the effectiveness of modafinil, a wake-promoting medication used to treat sleepiness in people with sleep disorders, and cognitive behavioural therapy (CBT) on reducing fatigue for over 300 adults with multiple sclerosis whose symptoms interfered with their daily activities.

Overall, investigators found that treatment with either modafinil or CBT alone, which was delivered over the phone, was associated with significant reductions of fatigue over 12 weeks.

A combination of both treatments also worked as well as each individual treatment but did not result in better fatigue scores than the independent interventions.

The findings are published in The Lancet Neurology.

First author Tiffany Braley, director of the MS/neuroimmunology division at University of Michigan Health, United States, said: “Fatigue is one of the most common and debilitating symptoms of multiple sclerosis, yet there is still uncertainty about how available treatments should be used or how medication-based treatments compare to behavioral treatments in the real world.

“This research offers new evidence to show that both CBT and modafinil are comparably effective for MS fatigue, which could shape treatment approaches to one of the most challenging symptoms experienced by people with multiple sclerosis.”

Of nearly three million people with MS worldwide, up to 90 per cent experience fatigue. Nearly half describe it as their most disabling and impactful symptom.

The research used a real world approach that more closely resembled clinical practice than traditional clinical trials and included stakeholders with MS who helped design the study.

More than 60 per cent of participants in each group of the study reported clinically meaningful improvement in fatigue, which was measured with a survey called the Modified Fatigue Impact Scale.

“These treatments, both individually and as a combination, should be considered as potential options for people with multiple sclerosis with chronic, problematic fatigue,” said senior author Anna  Kratz.

Trial participants who received only CBT maintained lower fatigue scores at an additional follow-up appointment 12 weeks after the study treatments ended.

CBT has shown robust and durable effects on fatigue in previous research.

“While many people with multiple sclerosis have limited access to behavioral health care like CBT, offering the treatment through telehealth can help reach more patients,” Kratz said.

“Our study shows that CBT is a feasible treatment that teaches fatigue management skills that can be employed indefinitely, with enduring benefits that last well beyond the treatment period.”

Although the three treatment assignments worked similarly well overall, participants’ sleep habits, or “sleep hygiene”, affected how well the treatment worked for fatigue.

Those with poor sleep hygiene tended to have better fatigue outcomes with CBT, and participants with very good sleep hygiene showed better fatigue outcomes with modafinil.

“Using wake promoting medications such as modafinil could worsen sleep quality in patients whose sleep problems are behavioral in nature,” Braley said.

“As sleep disturbances also contribute to fatigue in people with MS, it is important to avoid selecting fatigue treatments that could make sleep worse. Behavioral treatments such as CBT that include sleep education may be preferable for people with MS who have poor sleep habits.”

Parkinson’s-focused tracking app helps to slash A&E visits and increase exercise

An app which tracks activity in Parkinson’s patients has been found to help reduce hospital A&E visits, increase exercise and improve medication adherence. 

Precision medicine firm Rune Labs’ StrivePD platform has been trialled for 10 months in 138 Parkinson’s patients at a clinic in California.

The patients had an age range of 39 to 88 years and a mean disease duration of six years.

All patients used an Apple Watch with Rune Labs’ app to record their behaviour for at least six hours of data per day for seven days per week.

Patients with moderate severity (Hoehn and Yahr stage 2 & 3), bilateral symptoms and responsiveness to dopaminergic agents were included in the research.

Data collected included exercise and activity, sleep, falls and mobility, hospitalisations and medication compliance. Over 211,000 hours of data were collected and analysed across 40,000 data points.

The research found highly variable patterns in the number of “red flags” patients reported as well as mobility, tremour and dyskinesia patterns across the patient population.

A 42 per cent reduction in emergency room visits was reported, with a corresponding 18 per cent reduction in specialists’ time.

Ro’ee Gilron, lead neuroscientist at Rune Labs, said: “By taking a tailored approach informed by ongoing patient-specific data, we have seen substantial improvements in symptom management.

“With a significant reduction in ER visits, increased exercise levels, and enhanced participation in physical therapy, this preliminary data highlights promising and impactful benefits for patients, caregivers, and clinicians.”

The research found that 90 per cent of patients increased their exercise, with 52 per cent of users exercising more than 150 min/week. Also, 80 per cent of patients better adhered to their medication schedules.

Dr. Suketu Khandhar, a neurology specialist at Kaiser Permanente’s Sacramento Medical Centre, where the study took place, said: “Due to StrivePD, I can approach each patient session with a much richer understanding of their disease progression. Patients also feel more confident in managing their symptoms, which has led to increased exercise and better health outcomes.”

Keith Narasaki, a Parkinson’s patient involved in the study, said: “A few months back I thought I needed more visits with my doctor, but now StrivePD has helped me see a lot more about how I’m doing day to day, so now I feel that my visit frequency is fine the way it is. StrivePD has provided important information in my treatment of how I can manage my PD symptoms. It has helped quantify how and when I can optimise taking advantage of my ON time and try to remain functional during my off periods.”

Brian Pepin, CEO of Rune Labs, summarised the research: “This is large-scale research in partnership with one of the biggest healthcare systems in the US. The results provide hope for more than a million patients struggling with Parkinson’s Disease that consumer technologies can help patients, caregivers, and clinicians to better understand the patterns and triggers of this complex disease.

“There’s never been a shortage of data around PD. The big obstacle has been collecting, analysing and making this data usable at scale, and this programme has achieved exactly that.”

This research is published against the backdrop of a shortage of movement disorder specialists in the US. With only 600 movement disorders specialists available to care for over one million patients, this shortage has led to gaps in patient care, including ineffective therapeutic interventions, increased hospitalisations, and a surge in emergency room visits due to falls.

Potential MND treatment gets £76m backing

Promising new research to develop gene therapy to treat motor neurone disease (MND) and other conditions like dementia has secured major investment.

The new potential treatment discovered by a team at University College London (UCL) and backed by the MND Association, My Name’5 Doddie Foundation and LifeArc, has moved one step closer to people living with MND after securing a £76m investment from venture firms.

Launched earlier this week, US biopharmaceutical company Trace Neuroscience announced it has secured the investment to take forward its potential therapy into clinical trials which could one day preserve and improve muscle function.

This work ultimately aims to develop a cutting-edge gene therapy to slow down, stop or potentially even reverse disease progression in MND.

The treatment being investigated is an emerging area of drug development that targets a key aspect of diseases like MND and dementia at the genetic level.

Research by co-founder of Trace Neuroscience, Professor Pietro Fratta at UCL, has been backed by the MND Association for many years and is currently being supported by the MND Association, medical research charity, LifeArc, and My Name’5 Doddie Foundation who have jointly awarded £500,000 to the UCL team.

MND is a rapidly progressing terminal illness which stops the signals from the brain reaching the muscles. This can cause people to lose the ability to walk, talk, eat and drink, and eventually breathe unaided.

Average life expectancy is just 18 months from diagnosis. There is currently no cure or effective treatment.

The treatment works by restoring levels of a protein UNC13A, which plays an important role in the healthy communication between nerves and muscle cells. People with conditions like MND have reduced levels of this protein.

Around 97 per cent of people with MND will have changes in a protein known as TDP-43 which causes reduced levels of UNC13A. Therefore, these therapies have great potential for the majority of people with MND, and other conditions including dementia.

MND Association, director of research development Dr Brian Dickie, said: “This announcement marks a substantial investment into the further development of this specific area of MND research and will allow what we hope will be the rapid development of a promising new approach to treating motor neurone degeneration, targeting a pathological process which has been linked to 97% of all cases of MND.

“The MND Association has supported Professor Pietro Fratta and his lab over many years. Indeed, it was our joint Fellowship award, with the Medical Research Council, to Prof Fratta which led to the groundbreaking discovery in 2022 that has led to this promising new therapeutic approach.

“This news demonstrates how a modest amount of funding from the Association and others has wide reaching implications, in this instance and others providing the calatyst for further and large-scale investment to take a programme forward. It is exciting to see the direct impact the MND Association’s support is making in the search for effective treatments for this devastating disease.”

My Name’5 Doddie Foundation director of research, Dr Madina Kara, said: “This announcement demonstrates the key role charity funding plays in enabling progress and helping leverage additional funds. There is currently huge momentum in MND research and this is a significant step forward in progressing genomic medicine for people living with MND. Using antisense oligonucleotides designed to restore levels of essential proteins, could enable treatments that can slow down, stop or reverse progression of MND.

“We continue to support the important work of Professor Fratta and his lab at UCL and recently awarded him a £500,000 grant, through our Advancing Treatment Awards, to develop a new approach to delivering gene therapies for MND that could benefit the great majority of people living with the condition.”

Dr Paul Wright, head of MND at LifeArc, adds: “There is an urgent need for treatments for MND patients so we’re really pleased to see that this work, which could slow disease progression, is now one step closer to reaching them. Our mission at LifeArc is to get treatments like this to those who need them much more quickly. If successful, this gene therapy could signal a major breakthrough – not only for patients with MND, but also potentially those living with dementia and other neurological conditions.”

A short documentary ‘Turning the Tide’, backed by MND charities and the MND scientific community including the MND Association shows the progress of Pietro Fratta and his team’s work on UNC13A at UCL and shares first-hand the impact on the lives of people living with the disease and their hopes for ongoing research in this field. Watch the video below: