Latest news with #chronicIllness
Medscape
10 hours ago
- Health
- Medscape
Chronic Lyme Illness Needs Symptom-Targeted Treatments
Lyme infection-associated chronic illness (IACI) is real, often debilitating and long-lasting, and in urgent need of research that prioritizes treatments to improve symptoms affecting patients' function and quality of life — rather than waiting for certainty about cause, the National Academy of Sciences, Engineering, and Medicine (NASEM) concluded in a new report on Lyme IACI. An estimated tens of thousands of people in the US each year develop what the NASEM is calling Lyme IACI, often presenting with chronic fatigue, recurring pain, cognitive dysfunction and/or sleep disturbances despite receiving recommended antibiotic treatment for Lyme disease, the Academy's Committee on the Evidence Base for Lyme IACI Treatment wrote. These symptoms are distinct from known complications of Lyme disease such as arthritis and carditis. 'Testing interventions that act on symptoms as opposed to [waiting for an understanding of] pathogenic mechanisms is the most efficient approach to identifying treatments [that can] help patients living with Lyme IACI find relief,' NASEM Committee Chair Kent Kester, MD, said in a webinar held last month about the report. Mechanism studies should be conducted in parallel to guide future treatment studies, said Kester, an internist and infectious disease specialist who is currently the executive director of Vaccine Research and Development at the Coalition for Epidemic Preparedness Innovations. The report also emphasizes the 'unrealized opportunity' for the sharing of knowledge about other IACIes — such as long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — to better understand potentially common mechanistic pathways and treatments. It calls for the US Department of Health and Human Services to develop an integrated strategic plan for IACI research broadly, as well as a standardized research definition for Lyme IACI, and it recommends that a Lyme IACI research data coordinating center be developed to improve research efforts on Lyme IACI that currently are 'decentralized and uncoordinated.' 'This vision [for research] is terrific because basically it's saying that we need to view Lyme disease similarly to the way we view other illnesses that have chronic persistent symptoms…and that we can learn a lot from sharing knowledge…The time is now,' said Brian A. Fallon, MD, MPH, professor of clinical psychiatry and director of the 17-year-old Lyme and Tick-Borne Diseases Research Center at the Columbia University Irving Medical Center, New York City, who was not on the NASEM Lyme IACI committee. 'Clinicians have been struggling for a long time because they see patients with persistent symptoms and sometimes the Lyme disease has been really well diagnosed, and sometimes it is likely or possibly Lyme disease, but they're not really sure,' he said in an interview, 'and they're not sure how to treat these patients.' A scoping review of the literature conducted for the NASEM committee covered treatment, pathogenesis, and diagnosis of Lyme IACI, and it documented both the sparsity of randomized controlled treatment trials over the past 20 years and the poor understanding of mechanisms. Regarding diagnostic methods, research 'remains in the early stages of discovery,' the report said. 'No single candidate [test or method] stands out.' The broad recognition of long COVID has galvanized acceptance of Lyme IACI and of chronic disease states with potential infectious triggers, the committee wrote. However, in a statement about the report, physician leaders of the International Lyme and Associated Diseases Society (ILADS) expressed ongoing concern. The National Academies report 'rightly identifies that many people with Lyme IACI experience…symptoms strikingly similar to those found in long COVID and ME/CFS,' their statement said. 'Yet unlike these conditions, where progress toward treatment development is accelerating, patients with Lyme IACI still face stigma, dismissal, and inconsistent care.' ILADS is a nonprofit membership organization representing physicians, scientists, and other healthcare professionals that focuses on Lyme disease and other vector-borne illnesses. The 'State of Evidence' on Treatment Of 85 published peer-reviewed articles identified in the scoping review and published from 1988 to 2024, 19 evaluated treatments, and only six of these were randomized trials. Five of the six trials — all randomized controlled trials (RCTs) reported between 2001 and 2008 — evaluated extended courses of antibiotics (up to 3 months) and did not demonstrate sustained benefit in primary outcome measures. One study did not report safety monitoring, and the other five reported adverse effects, the report said. 'The lack of demonstrated effectiveness of various extended antibiotic regimens in these randomized trials suggests that pathogen persistence is not a primary driver of Lyme IACI,' the report said. 'However, the current evidence is insufficient to rule out the possibility that bacterial persistence might occur in a subset of patients living with Lyme IACI.' The role of antibiotic treatment and the question of persistence of Borrelia burgdorferi have been among the most controversial topics in what the NASEM calls Lyme IACI, with treatment guidelines issued by the Infectious Diseases Society of America (IDSA) in 2006 and 2020 and ILADS in 2014 taking different stances and offering differing recommendations. Asked about the NASEM report, Elizabeth L. Maloney, MD, education director of VectorWise CME, said 'it's important that [the NASEM] kept the door open to persistent infection' as a potential mechanism for further research. (VectorWise CME, which maintains accreditation by the Accreditation Council for Continuing Medical Education [CME], provides virtual free courses on Lyme disease and other vector-borne diseases. All courses are accredited by the American Academy of Family Physicians.) Case reports have reported detection of B burgdorferi in post-mortem human samples and in primate models that simulate delayed treatment of Lyme disease, the report noted. Regarding the antibiotic treatment trials, Maloney said important lessons have been overlooked. One of the trials of IV ceftriaxone, for instance, reported sustained improvement in severe fatigue, which was one of its primary outcome measures. Another trial of patients with chronic cognitive impairment— this one from Fallon's group at Columbia — reported sustained improvement in secondary measures of pain and physical functioning after a 10-week course of intravenous ceftriaxone. (Patients in the Columbia study had improvement in cognition, the primary outcome, at 12 weeks — 2 weeks after treatment ended — but lost that improvement by week 24.) 'So there is some randomized controlled trial evidence — small numbers but real evidence — that ceftriaxone helped [some] patients,' said Maloney, who was a co-author of the ILADS treatment guideline. The NASEM report gave a nod to debated issues, noting 'there remains ongoing debate over the trial designs and outcomes [of the antibiotic trials], as discussed through extensive re-analyses of the available data,' including a 2012 paper co-authored by Fallon, 'A reappraisal of the US Clinical Trials of Post-Treatment Lyme Disease Syndrome.' The sixth RCT identified in the scoping review looked at yoga and found insufficient evidence of benefit for fatigue and pain, the report said. With geographic differences in mind, the NASEM committee limited its scoping review to studies of Lyme IACI in the US, which it considered to be 'Lyme-associated chronic illness with otherwise unexplained symptoms that persist for at least 6 months following antibiotic treatment for either proved or presumed infection with B spp that cause Lyme disease.' (That definition is less stringent than the IDSA's 2006 research case definition of Post-Treatment Lyme Disease Syndrome (PTLDS), which requires an initial Lyme disease diagnosis meeting the surveillance case definition used by the CDC.) European studies are not always generalizable to the US because borrelial species associated with Lyme disease in Europe — and the clinical features of Lyme disease — can differ from those found in the US, said Maloney, who lives and has practiced in a Lyme-endemic area of Minnesota. Maloney, a family physician, became involved in CME in 2007 after treating patients 'who didn't always present as a Lyme patient was supposed to present,' such as patients with arthritis but no history of an erythema migrans rash. 'I read the medical literature and found that things that were presented as black and white and well worked out were not,' she said, 'and had many shades of gray.' The NASEM report only briefly discussed tick-borne coinfections, noting that little is known about how they do or do not affect the development, diagnosis, treatment, and prognosis of Lyme IACI — and that research is needed. Evidence on Pathogenesis, Diagnosis, Incidence The committee's scoping review identified 23 articles addressing potential mechanisms of disease, most of which were not evaluated in prospective studies. In addition to pathogen persistence — and persistence of bacterial remnants — proposed mechanisms for Lyme IACI include immune dysregulation and autoimmunity, central nervous system dysfunction, metabolomic changes, and gut dysbiosis. All are important to consider, Fallon and Maloney emphasized in interviews. Another 27 studies covered the diagnosis of Lyme IACI. Four described direct detection methods that need to be replicated and developed into clinically useful assays; 15 described indirect detection methods using a wide range of potential biomarkers (eg, autoantibodies and other immune markers, metabolite or microbiome signatures, and CNS imaging); and the remaining eight evaluated clinical questionnaires or evaluation scales. (Only two of the eight questionnaires and scales were validated but for monitoring disease progress and not for diagnostic purposes.) Pediatric patients have been scarce in Lyme IACI research, according to the report. Only one of the 27 papers covering diagnosis focused on the pediatric population, for instance, and only three included children along with adults. Moving Forward Lyme IACI is a broad and inclusive name, NASEM experts believe, that encompasses different terms used over the years to describe persistent symptoms (including chronic Lyme and persistent Lyme). The name also acknowledges the heterogeneity and different diagnostic histories of patients, they said, including those with missed and delayed diagnoses. The development of formal consensus research definitions that 'address the different strata of the broad range of people living with Lyme IACI,' the report noted, will make it possible to more accurately determine population prevalence and to conduct impactful research. The PTLDS definition has provided standardization but is a 'subset' of Lyme IACI and excludes many individuals, Kester said in the webinar. Thus far, limited research has suggested that 10%-20% of the approximately 476,000 patients who contract Lyme disease each year develop persistent symptoms after standard antibiotic treatment, the NASEM report said. In addition to its call for consensus definitions, the NASEM report called on the National Institutes of Health (NIH) and CDC to define standard tools and metrics — including patient-focused outcome measures — and said that patient registries and biobanks are valuable and have been underutilized thus far. Clinical studies, it emphasized, should be 'well-designed, randomized trials with appropriate control groups.' Maloney said possible reliance on RCTs is concerning, considering the heterogeneity of the Lyme IACI population and the need for subgroup analyses. 'I worry that [researchers] will not be able to amass the number of patients necessary, even with an expanded definition,' she said in the interview, adding that evidence-based medicine encompasses more than RCTs. She also worries that 'with NIH funding being slashed, tick-borne disease research is not going to get the attention it needs.' NIH funding for Lyme disease research has increased in recent years, but according to a per-patient funding analysis by the Center for Lyme Action, research on West Nile (with an estimated 2566 new diagnoses in the US in 2023) has been funded at 75 times the rate of Lyme disease. In another comparison, the $50 million granted for the study of Lyme disease in 2022 represented < 2% of the public funds invested in HIV/AIDS, according to the Center. Understanding persistent symptomatology was part of a strategic tick-borne disease research plan that was developed by the NIH in 2019. In 2023, NIAID funded seven projects addressing persistent symptoms slated to run through 2028, with first-year funding of $3.2 million. (The NIH did not respond to a query from Medscape Medical News about the future of these and other projects relating to Lyme IACI.) With private funding from the Steven & Alexandra Cohen Foundation, the Clinical Trials Network for Lyme and other Tick-Borne Diseases, coordinated by Fallon, has a slate of small studies underway of therapies that address potential mechanisms of Lyme IACI: tetracycline, transcranial direct current stimulation with cognitive retraining, vagus nerve stimulation, mast cell treatment, and pulse-dosed ceftriaxone). (Network researchers have been using research classification criteria for Lyme disease that are intended to allow for more inclusive and generalizable studies. In a paper published this year, they describe their proposed research classification system, with criteria for Lyme disease at different levels of diagnostic certainty: Well-defined, probable, possible, and uncertain.) Fallon said he is hopeful that the NASEM's recommendations can be implemented. 'Everyone's committed to reducing tick-borne illnesses, and there's a strong interest in [the Administration] in addressing chronic illness,' he said, noting 'it's not just Lyme disease — the coinfections are causing major problems.' Practice Today In practice, meanwhile, Fallon said he and others can help patients by utilizing approaches and therapies 'in our current armamentarium, drawing upon rheumatology, neurology, psychiatry' and other fields. 'I tend to see patients who have had chronic [neuropsychiatric] symptoms for a long time and have received quite a lot of courses of antibiotics,' he said. 'I focus on some of the treatments we know are helpful for people with neuropsychiatric symptoms. For example, there are some psychiatric medications that can help reduce arthritis pain, reduce neuropathies, help improve energy.' Physicians trained in integrative medicine and functional medicine bring 'a broad, comprehensive approach to examination' that can be helpful in Lyme IACI, said Fallon, whose team at Columbia's Lyme and Tick-Borne Diseases Research Center includes an integrative medicine physician. 'They may look at some of the other organisms that may be complicating the course of illness, for instance. They may look for other causes of persistent symptoms such as endocrine problems or mold problems…that can complicate recovery,' he said. 'And they frequently use herbals, which can be helpful.' In its statement, ILADS urged adoption of 'a dual-path strategy [of investing] in long-term research while also expanding access to care based on current best practices.' This includes treatments 'with emerging or empirical evidence that have shown benefit in some patient populations and carry an acceptable risk profile when monitored responsibly.' Many patients improve, the statement said, 'with tailored therapies, including antimicrobial, immune-modulating, and symptom-targeted treatments, especially when the treatments are guided by a clinician who listens to the patient and tracks outcomes over time.' The NASEM committee, comprised of 14 experts from various disciplines, including one patient, heard from over 35 invited speakers representing patients, clinicians, researchers, funders and more. Their work was sponsored by the Steven & Alexandra Cohen Foundation and was recommended by the US Department of Health and Human Services Tick-Borne Diseases Working Group (TBDWG) that was established by Congress in 2016. (Maloney was a member of this group.) The TBDWG produced three reports that addressed persistent symptomatology, among many other issues, before concluding its work in 2022.
Daily Mail
2 days ago
- Health
- Daily Mail
Rania has a life many dream of... But she's been hiding a devastating secret
At first glance, Rania Melhem seemed to have it all - she had just finished a university degree, landed her dream job and married the love of her life. But behind closed doors, the mum-of-two was hiding a devastating secret: she had been silently battling multiple sclerosis for years after being diagnosed at age 19. From the outside, Rania seemed perfectly fine - but she was suffering from nerve pain, muscle spasms, constant severe pins and needles, and blurred vision. Beneath her calm exterior, a silent storm raged inside her body - one she fought fiercely to keep hidden. The early signs were subtle, yet relentless. 'My blood pressure would drop, and then I would end up fainting. My vision would blur and I'd start to feel a tingling sense in my fingers,' Rania, now 35, told FEMAIL. The dizzy spells struck without warning, shaking the foundations of her everyday life. 'I was endlessly tired. It was my first year of university so I had a job - but I'd fall asleep on the train and miss my stop,' she explained. Before her diagnosis, the unpredictability of her symptoms forced her into isolation - and slowly, her world grew smaller. Despite her growing fears, getting answers was anything but straightforward. 'My GP refused to give me a brain scan because my sister had been diagnosed with multiple sclerosis (MS) years prior and he didn't believe it could happen twice in one family,' she recalled. But the truth was revealed after Rania's mother took her to another GP and pushed for a scan: she also had multiple sclerosis, a chronic neurological condition that would alter the course of her life. For many years, Rania kept her diagnosis to herself, sharing it only with her closest family and a few trusted friends. 'For probably the first five years, I didn't talk about it much,' she explained. At the time, she struggled to find the words to describe what she was going through. Though, no one would ever suspect she was struggling with an illness. She was attending university, working, and living a life that looked no different from any other young woman her age. But she was grappling with a daily reality that was far more complex and exhausting. During those early years, the mental and physical toll of the illness was at its most difficult. 'That was probably the time when, mentally, I was the worst,' Rania recalled. The fatigue was overwhelming, and her body often betrayed her in unpredictable ways - her blood pressure would drop suddenly, causing her to faint without warning. Navigating social situations was a challenge, especially when friends didn't understand what multiple sclerosis was or how to react when she became unwell. In those moments, Rania felt vulnerable and isolated. She relied heavily on her family for support and poured much of her energy into her studies, finding comfort and focus in academia. Looking back, Rania reflects on that period as one of her deepest personal struggles, - but also a time of profound introspection. The challenges she faced forced her to reconsider what truly mattered in life and to cherish the people who stood by her side. It was during this time she deepened her relationship with her now-husband - a connection that brought hope and stability amid uncertainty. Despite the hardships, she graduated among the top students in her state, a testament to her resilience and determination. Yet to the outside world, she was simply 'fine,' masking the invisible illness she fought every day. One of the hardest aspects of living with MS, Rania says, is the invisibility of the disease. 'You can look completely fine on the outside, and no one realises what's happening inside,' she said. The damage MS causes to the brain and spinal cord, along with the variety of symptoms it produces, often remain unseen by others. Over time, Rania learned to hide the pain and fatigue behind a practiced smile. 'You get really good at pretending everything is okay,' she explained. Even now, after nearly two decades, few people truly know how she feels beneath the surface. The turning point for Rania came after she married and moved out of her family home. For the first time, she faced the full weight of managing her condition independently. While living with her parents, much of the physical burden had been shared - from cooking and cleaning to practical everyday tasks - allowing her to conserve energy for work and recovery. But once she was responsible for running her own household, juggling a full-time job, and managing her symptoms alone, the exhaustion became overwhelming. It was then she realised she needed to ask for help. At 25, Rania reached out to MS Plus, an organisation offering support and services to people living with MS. Through them, she connected with an occupational therapist who assessed her needs and helped put practical measures in place. She was able to access cleaning services to reduce her fatigue, physiotherapy to manage pain, and ongoing emotional support. The therapist also encouraged her to use writing as a form of therapy, recognising how important it was for Rania to express her experience. What began as private journaling soon evolved into a blog, where Rania shared her journey under the alias 'Miss Anonymous.' Despite the challenges, Rania clings to the things that bring her joy. Music, once a passion she shared on stage, became a private refuge since MS affected her swallowing. 'I used to sing a lot, but the MS impacted my swallowing, and it was making me swallow a lot slower. So while I was singing, sometimes I would choke because I couldn't swallow and get the words out in time.' Though she stopped performing publicly, she still sings every day, finding comfort in the melodies that carry her through the hardest days. Her story is also one of family bonds - her older sister Marie was diagnosed with MS at 27, facing similar struggles at a time when understanding of the disease was far more limited. 'Back then, MS wasn't something many people knew about like it is now,' she said. Though they have undergone similar treatments, the illness manifests differently for each of the sisters. 'We both have different side effects and different symptoms,' Rania said. Looking back, Rania remembers the protective cocoon her parents created during those early years. 'I didn't really know what was going on because I was only 13, and I think our parents used to really try to protect us from anything bad that was happening,' she said. Today, Rania urges Aussies to offer practical and emotional support to those living with MS. 'Making them a meal, helping with the kids if they have them, taking them for a few hours so they can get something done, or have a rest. Helping them clean if they'll let you - I hate people cleaning my house, but it's definitely something that would be super helpful,' she said. She encourages friends and family to connect with MS Plus and participate in community events. 'It's a beautiful walk around Albert Park, and it's really good to reflect and be together as a community of people who have MS, their families, their carers, their kids, their loved ones, to really feel like you're in it together,' Rania said. Though MS remains a daily challenge, Rania credits her family for giving her the strength to keep going. 'We're lucky to have our mum and dad, who always taught us to be strong, and to get up every time you fall,' she said. Their love and resilience remain her guiding light through the uncertainty. In closing, Rania offers a heartfelt tribute: 'This is dedicated to my dad, who passed away recently. Thank you for always giving us the strength and the courage to keep going even when things were difficult.' Rania is an ambassador for MS Walk Run + Roll - the national fundraiser supporting those living with Multiple Sclerosis.
Forbes
30-05-2025
- Health
- Forbes
Bodies, Brains And Burnout: Three Tips For An Emergency Reset
The Royal Society of Medicine in London are set to host a conference in July relating to the convergence of symptoms between Covid-19, hypermobility syndromes and neurodivergence. A diverse range of specialisms (immunology, rheumatology, psychiatry, cardiology) are coming together to discuss the extent of overlap in these patients. It is increasingly recognised that many neurodivergent people are experiencing greater levels of chronic illness, which may have been exacerbated by / precipitated by the Covid-19 outbreak. The organisers state: 'post-COVID, we can still see the ongoing 'fall out' of hypermobile and neurodivergent patients. Particularly young, working-age people are rendered disabled, and more women are affected than men.' This is incredibly damaging to career prospects and, given how little knowledge exists in mainstream medical and occupational health circles, can feel confusing and frightening for those who don't know where to turn for advice. Many are struggling to stay in work, or on course. Burnout is real – defined as an occupational condition, where chronic stress has not been managed and leads to exhaustion, apathy and reduced productivity – and, the organisers suggest, much more common in people with this overlap in symptom and diagnoses. Whilst we wait for further research and development, and seek first line support from medical practitioners, it's good to remind ourselves of how we can self-help in burnout: boundaries, rest, self-care. Many ambitious, career-driven people struggle with the concept of rest. We plough on until we fall over, thinking of rest as a reward for our hard work. You need to flip this narrative and rest in order to do your best work instead. But before you can focus on making time for rest, you need to reset your boundaries. You will be required to say no and 'let people down.' You will have to do this with friends and family as well as colleagues. If you are a people-pleaser and your identity is tied up with being useful, this will be difficult. Two things to remember: (1) you can't be helpful to anyone if you 'crash out' and (2) you are a human being not a human doing. Not everyone will respond positively if you stop doing what you usually do. Some people may want you to continue exhausting yourself to make their lives easier. Considering who those people may be in your life is actually quite helpful long term, so consider this a cleansing moment rather than an abdication of your responsibilities. This is an area where a professional could add value. For example, coaching is very effective for workplace burnout, counselling can help you process your dynamics in personal social groups or choose clinical therapy if you need to work on deep seated family relationships and trauma. You are not the only person in burnout right now, you can find support and validation in online groups or with peers who have experienced the same. Groups where the facilitation is professional and trained are recommended. For example, Project 507 CIC have a range of options from a free newsletter to a Book Club right up to monthly supervision groups and formal training. These are particularly targeted for professionals working in social justice and caring professions. Seeking peer support is one thing but long term, the goal is for you to have an internal reference for your own limits and to feel comfortable knowing when you have had enough, given too much and redrawing the boundary. You don't need permission from anyone to know your own capacity. 'I know I'm in burnout, but I don't know where to start.' This comment, overheard recently, reminded me of the 'brain fog' that comes with some health conditions, where your cognitive processing speed has been compromised, leading to feeling overwhelmed and not knowing where to even start. You start, by stopping. Review your diary for the next month. Cancel all non-essential plans and obligations. Delay and defer anything you can. People will understand: 'I'm terribly sorry, I need to address some urgent priorities, and I won't be able to complete the project against the current deadlines. I could deliver by X / I recommend (insert alternative colleague or provider).' No need to over explain. The urgent priority, by the way, is YOU. Give your permission to slow down the cardio if you need to and seek medical advice on what might be better for you. Lots of career driven people are exercise junkies, but with hypermobility syndromes exercise needs careful planning and professional guidance. Rest and recovery is as important as exercise in a sustainable health routine. Further, if you are suffering from chronic fatigue, exercise has been found to exacerbate symptoms and can be totally counter-productive until you have recovered. Sleep, watch TV, read a book, avoid scrolling your phone – this is not restful. Buy a basic phone if you have to or take breaks with no phone. After rest comes the self-care, which could include diet, therapies, recreation. It can be very difficult to plan a healthy diet when you are overwhelmed and in brain fog, so you need some 'go-to' short cuts, like a list of simple food that you can easily action over a weekend to give your body a break. You might have some frozen meal portions that you can eat instead of a takeaway, if you also eat differently from the family. Parents might need different food to growing kids, but cooking separately is yet another thing on the to do list, so instead of worrying about solving the problem permanently, plan yourself a one meal or one weekend alternative just to feel like you are investing in yourself. Nutrition is key to chronic fatigue but you can't solve this yourself, in one go. Start with what you can manage and seek help with nutrition. It may be important to check for deficiencies like Iron, B12 and vitamin D and have your Thyroid function checked. Always seek medical advice if you are concerned. Therapies like massage and yoga cost time and money. Often people in burnout can't handle even one more thing to plan! What is the easiest, quickest most relaxing thing you can do for yourself? Sitting in the garden with your morning tea or even five minutes of deep breathing could be the place to start. Just the very act of doing something for yourself, just for you, not because you must or because someone else needs it can be the start of a mental reframe. When you are in burnout, motivation for recreation can be hard. The planning and logistics might take so much effort that the actual fun or social interaction is not worth it. So again, the advice is to start with something small, just opening the door and letting a tiny crack of light in! This could be as small as a WhatsApp exchange with someone who makes you feel energised not depleted, or watching a film you've not had time for yet. Professor Emeritus Amanda Kirby is a neurodiversity expert who has been writing about this for many years. She notes the need for resources to address the challenges of burnout associated with Covid, hypermobility syndromes and neurodivergence: 'I think adversity is a key component for secondary challenges impacting on health and wellbeing post Covid - there is greater inequity in society and who gets help and support.' Professor Kirby points out the link between adversity and chronic health conditions over a lifespan and the limits of 'siloed provision despite co-occurrence being the rule rather than the exception'. Having first published on the link between neurodivergent conditions like Dyspraxia (Developmental Coordination Disorder) and hypermobility in 2005, Professor Kirby welcomes the increasing attention these issues are getting in the post-Covid crisis of work absence.
Daily Mail
26-05-2025
- General
- Daily Mail
Bride-to-be branded 'self-centred' after banning chronically-ill sister from bringing service dog to her wedding because it's 'not elegant'
A woman has revealed her sister tried to ban her service dog from attending her wedding because the pooch would make the day 'less elegant'. Taking to Reddit, the 28-year-old woman, believed to be from the US, shared how she has a chronic condition that can trigger sudden fainting spells and her dog Lucy is trained to alert her before an episode so she can sit down. When the woman explained to her sister that her 'life-saving' dog will be with her at the wedding, the bride claimed Lucy would ruin her day and steal the spotlight. She suggested her sister should leave Lucy at 'home for a few hours or that she should sit near the back where 'people won't see her'. Upset by her sister's suggestion, she explained that it's 'unsafe' for her to go anywhere without Lucy but the 'bridezilla' 'dug in her heels' and accused her of 'making this all about me'. The post read: 'I (28F) have a service dog, Lucy, who's been with me for four years. I have a chronic condition that causes sudden fainting spells, and Lucy is trained to alert me before an episode so I can sit down, and she'll stay with me during an episode until I'm alert again. It's a life-saving measure and has become a non-negotiable part of my daily life. 'When my sister (30F) got engaged, I was thrilled and, of course, very excited to attend her wedding. 'I reached out well in advance to let her know I'd be bringing Lucy along, expecting her to understand. But my sister was less than thrilled. 'She claimed Lucy would "distract'" from her big day and that having a dog there would make it less elegant. 'My sister suggested I "just leave her at home for a few hours" or that I sit near the back where "people won't see her." 'This upset me because, as I explained to her, Lucy is there for my safety and it's genuinely unsafe for me to go anywhere without her. I offered to keep her as out-of-sight as possible and assured her that Lucy is highly trained and would stay by my side quietly. 'But my sister dug in her heels. She told me I was "making this all about me" and asked why I couldn't "just be normal for one day."' When the woman explained that she couldn't compromise her health or safety, her sister said she was 'choosing my dog over her.' According to the woman's post, her family is now divided on the issue, as her parents believe she should honour her sister's wishes. She concluded: 'Our family is split. My parents think I should respect my sister's wishes since it's "her special day", but a few of my friends believe she's being unreasonable. I've even thought about skipping the wedding to avoid the whole mess, but I know that would upset her too. 'So, AITA for insisting on bringing my service dog to my sister's wedding?' When the woman explained to her sister that her 'life-saving' dog will be with her at the wedding the bride claimed the service dog would ruin her day and steal the spotlight (stock image) Many rushed to the comments to leave their own thoughts on the drama, with most slamming the bride's attitude. One person said: 'Seriously, OP's sister sounds very self-centered' Another said: 'It's like she would tell a person in a wheelchair to not bring their wheelchair because it would distract from her "special day". Someone else added: 'At 30-years-old, if she thinks she will be outshone by a dog, she has bigger problems than you.' Many suggested it would actually draw even more attention away from the bride if her sister fainted during the ceremony without warning from her service dog. One person wrote: 'Having an episode at her wedding because you don't have your dog will inadvertently make it even more about you.' Another added: 'I was gonna say something similar - wouldn't it pull focus from the bride if the sister has an episode in the middle of the wedding and doesn't have Lucy to pre-warn her?' Someone else added: 'Sister is really ignoring the obvious. EMS having to come in and tend to someone who fainted is much more distracting than a quiet dog.' A fourth agreed: 'I was thinking, wouldn't collapsing at the wedding in the middle of the ceremony or onto the buffet table at the reception be more of a disturbance than a quiet, well trained dog?' Others also called the woman's family out for siding with her sister, as they suggested they were essentially 'choosing a party over your health and safety'. One person's comment read: 'If I had a sister who was prone to fainting, I'd let her bring her dog, her cat, her horse, and her doctor. She could come in a horse-drawn carriage, for all I care. You sister is a bridezilla, and that's the NICE word for her.'
WebMD
22-05-2025
- Health
- WebMD
Personal Milestone: Regaining My Full Strength After PsA
This is a post I've wanted to write for a long time. Not because I needed to prove anything, but because I knew how much this moment would mean to me when it finally came. After four years of navigating life with psoriatic arthritis, I can finally say: I've regained my full strength. It still feels strange to put that into words. There was a time when that version of me felt completely out of reach – like she was part of a past life I'd never get back. But here I am. When I first got sick, I had no idea what was happening to me. The fatigue was relentless. Not the kind of tired you feel after a long day, but the kind that sinks in and doesn't go away no matter how much you rest. Everything became hard. Just getting out of bed took effort. Moving around the house felt like a workout. And over time, my muscles started to atrophy. I became so weak I could hardly recognize myself. I spent about six months in bed before I got on the right treatment plan. That half-year stripped me down in so many ways. Physically, I was barely functioning. Emotionally, I was overwhelmed. I grieved the version of myself who could do things without having to plan every movement. The one who could walk, lift, carry, stretch – without pain, without hesitation. During that time, I remember staring at my old workout clothes hanging in the closet, wondering if I'd ever be able to wear them again. Not just because they represented fitness, but because they symbolized a version of myself I missed deeply: capable, energized, free. I missed feeling strong not just in my body, but in my spirit. Back then, I wasn't sure I'd ever feel strong again. And honestly, there were many moments where I stopped trying to hope. It felt safer not to. Setting expectations too high only led to more disappointment, and I was already carrying enough grief. But slowly, piece by piece, I started rebuilding. Not in some cinematic, dramatic way. Just one day at a time. It started with sitting up more often. Then stretching. Then walking a little. Then lifting light weights – much lighter than what I was used to, but still a start. It was hard. It was humbling. It was slow. And sometimes it felt like nothing was happening. But over the years, with patience and consistency, I've worked my way back. There were so many moments when I had to celebrate the smallest wins: being able to unload the dishwasher without sitting down halfway through. Taking a shower and drying my hair without needing a nap afterward. Doing five bodyweight squats without my joints screaming at me. None of these things would be impressive to the average person – but to me, they were everything. Now, I'm lifting the same weights I could before all of this started. I'm doing the workouts I used to do, with modifications as needed. I'm moving with confidence again. That's not to say everything is easy now. I still need more rest. I still have to plan ahead. I still deal with symptoms. But I can do what I love again. And for me, that's huge. Strength has taken on a new meaning for me. It's no longer about what I look like or how many reps I can do. It's about what I've overcome. It's about continuing to show up for myself even when I'm tired or discouraged or flaring. It's about listening to my body and adjusting when I need to. It's about the resilience I've built by starting over again and again. What most people don't see is how much effort it takes behind the scenes. Planning workouts around medication timing. Making sure I recover properly. Accepting that some days I'll need to scale back. Giving myself grace when my body needs more than I want to give it. This isn't the same kind of strength I had before. But in many ways, it's more powerful now. Because it's hard-earned. Because I had to fight for it. And it wasn't just the physical effort; it was mental, emotional, and spiritual too. Rebuilding strength meant rebuilding trust with my body. After so many months of feeling like my body was betraying me, it took time to believe that we could be on the same team again. That my body wasn't the enemy – it was the place where healing could still happen, even if it didn't look like I expected it to. Looking back on those early days of diagnosis, it's hard to recognize myself. Not just because I was physically weaker, but because I felt so disconnected from the life I knew. I felt like I had lost so much of who I was. And it wasn't just about not being able to lift weights; it was about losing independence, confidence, even identity. Chronic illness can do that to you. It strips things away until you're forced to rebuild from the ground up. But that rebuilding process has changed me. It's made me slower, yes – but more intentional. Softer in some ways, but stronger in others. More aware of what actually matters. More grateful for the things I used to overlook. Now, every time I lift something heavy or go for a long walk or push through a workout, it feels like a small act of reclamation. Like I'm getting more of myself back. Not the exact same version I was before, but a version that's rooted, steady, and a lot more compassionate. There's also something incredibly grounding about knowing what it took to get here. When I see myself in the mirror or hit a new personal best at the gym, I don't just see muscle.I see perseverance. I see every bad day I moved through, every flare I didn't let define me, every painful step that led me back to movement. My strength isn't measured in pounds or performance anymore. It's measured in presence. In resilience. In grace. If you're in the thick of it right now – whether you're newly diagnosed, flaring, or just completely worn out – I hope this gives you a little hope. Not the kind that tells you everything will magically get better, but the kind that reminds you healing is possible in its own way, in its own time. Progress might be slow. It might feel invisible for a while. You might take two steps forward and one step back. But your body is still yours. Your strength is still there, even if it's buried under layers of pain and fatigue and frustration. You don't have to rush it. You don't have to force it. You just have to keep showing up when you can. And rest when you can't. You're not weak for needing more time. You're not failing because your recovery doesn't look like someone else's. Healing is not linear, and it definitely doesn't care about timelines. But it does happen. I'm proof of that. Four years ago, I couldn't walk across my house without getting winded. I couldn't lift 5 pounds. I couldn't imagine doing a full-body workout again. But now, I'm doing it. Not perfectly. Not always easily. But I'm doing it. And more than anything, I'm proud of that. Not proud in a 'look at me' way, but proud in a quiet, grounded way. The kind that comes from knowing what it took to get here. From remembering how hard it was. From honoring the version of me who didn't give up, even when she wanted to. So yeah, this is a milestone worth marking. Not because I'm 'back to normal,' but because I found my strength again. Because I now understand that strength can look different at different points in life, and that doesn't make it any less real.
