【免责声明】本文仅代表作者本人观点，与和讯网无关。和讯网站对文中陈述、观点判断保持中立，不对所包含内容的准确性、可靠性或完整性提供任何明示或暗示的保证。请 读者仅作参考，并请自行承担全部责任。邮箱：news_center@staff.hexun.com 凤凰网科技讯 11月26日，渐冻症抗争者蔡磊发文回应"蔡磊称自己只剩3到5年生命" ，他表示，此热搜热榜内容属于扭曲误导。我原话意思是：渐冻症 患者平均生存期只有三到五年。这是疾病的普遍临床数据，并非对我个人生命的判定。 他表示，长期以来，部分自媒体一直炒作我的病情，时而造谣 "身体好转"，时而渲染 "病情恶化"，严重偏离事实。我不得不来说明一下。渐冻症残酷 致命，我的身体也在持续恶化，并不美好，这是事实，但这不是重点，重要的是我还可以通过科技手段继续全力科研推进，还有希望，而且希望越来越大！ 科技不仅可以改变生活，也可以改写生命。希望大家多关注持续在推进的科研工作，社会各界在一起支持疑难病攻克，每一份努力都可能给所有人带来健康 的福祉，我也准备在即将到来的新年给大家汇报更多的工作成果。多关注美好和希望，少炒作和误导，谢谢！ （责任编辑：王治强 HF013） ...

蔡磊介绍道，渐冻症"AI科研大脑"已经在高效运转，将科研速度提升了数十倍乃至上百倍。"目前我们 已经完成了近4万篇渐冻症核心文献的系统性梳理，并基于此，对数百个有潜力的候选药物进行排序， 正联合全球的科学家们加速验证。" 日前，渐冻症患者、京东前副总裁蔡磊进行了本年度首次直播，他在直播中用眼控打字，文字随后被语 音播放出来，"身体在渐冻症的侵蚀下不断失去功能。"11月25日，蔡磊用文字回复南都N视频记者称， 他希望通过这次直播向大家传递一种韧性精神，告诉大家他还在坚持战斗，"只要身体状况还有一丝允 许，我都会雷打不动投入科研探索和各方沟通。" 蔡磊直播视频截图。 "很遗憾由于病情持续发展，我现在已经很难亲自参与直播，甚至连简单的连线互动都变得十分艰 难。"蔡磊在他今年的首次直播中表示，他的身体在渐冻症的侵蚀下不断失去功能。 蔡磊用文字回复南都记者称，尽管现在完全无法说话，全身动弹不得，但他始终坚持用眼睛和耳朵工 作。他表示，接下来仍然会将全部精力集中在科研工作。"与渐冻症抗争这6年来，只要我的身体状况还 有一丝允许，我都会雷打不动地投入科研探索和各方沟通，推动各个研究管线的进展。" 采写：南都N视频记者 林诗 ...

Core Points - The article discusses the current health condition of Cai Lei, a former vice president of JD.com, who is suffering from late-stage amyotrophic lateral sclerosis (ALS) and has lost most of his physical abilities [1][5] - Despite his severe condition, Cai Lei continues to lead research and development projects aimed at ALS treatment, having funded over 50 million yuan in external research support over the past 20 months [5][9] Group 1 - Cai Lei has lost the ability to speak, swallow, and move, requiring assistance for daily activities and medication [1] - He uses an eye-controlled device to communicate and manage various business operations, working from 8 AM to midnight [5] - His efforts in drug development have positively impacted other ALS patients, with one young patient reportedly regaining her health after treatment [5] Group 2 - Since his diagnosis in 2019, Cai Lei has established a big data platform connecting over 10,000 patients and initiated several charitable projects, investing tens of millions of yuan [9] - He was awarded the "National Self-Reliance Model" in May, expressing that this honor is a recognition not just for himself but for the entire ALS community [9] - Cai Lei remains optimistic about the future of ALS research, stating that miracles have already happened and will continue to occur [5][9]

Core Viewpoint - The article highlights the ongoing efforts of Cai Lei, who, despite severe health challenges due to ALS (Amyotrophic Lateral Sclerosis), continues to lead research initiatives and fundraising efforts to combat the disease, demonstrating resilience and commitment to scientific advancement [2][8]. Group 1: Health Condition and Communication - Cai Lei has lost all language abilities and is unable to move his arms, legs, or neck, relying solely on liquid food for sustenance [2] - He communicates using an eye-control device, typing quickly to maintain daily interactions, although he requires frequent breaks due to fatigue [4] - Despite his physical limitations, Cai Lei remains mentally sharp and actively participates in online research meetings [4] Group 2: Research and Collaboration - Between July 26 and August 31, Cai Lei's research team held 14 online meetings with international experts on various topics related to ALS treatment [5] - Cai Lei has reached out to AI companies like DeepMind for collaboration in tackling ALS, highlighting the potential of AI in solving complex biological problems [5] Group 3: Funding and Donations - In the past 1 year and 8 months, Cai Lei's team has donated over 50 million yuan to external research projects, with plans to continue funding numerous scientific initiatives [7] - He initiated the "Spring Bud" plan, committing 10 million yuan to support ALS research, with additional personal contributions planned [8] - In January 2024, Cai Lei announced a further donation of 100 million yuan for ALS research and clinical projects [8] Group 4: Achievements and Impact - In 2024, under Cai Lei's leadership, 10 drug pipelines have entered clinical stages, and the "Gradual Recovery Mutual Aid Home" has reached 15,000 ALS patients [9] - Cai Lei established an ALS animal testing base to expedite drug testing and efficacy validation [9] - He received the "National Self-Strength Model" title in May 2023, which he views as recognition for both himself and the broader ALS community [9]

Core Viewpoint - The article discusses the current condition of Cai Lei, a former vice president of JD.com, who is suffering from ALS (Amyotrophic Lateral Sclerosis). Despite his severe physical limitations, he continues to lead his team and manage various aspects of work through eye control technology, emphasizing his determination to fight against the disease and contribute to scientific research [3][4][5]. Group 1 - Cai Lei has lost all ability to speak and has limited mobility, relying on liquid food for sustenance. His condition has been stable for several months, and he communicates through eye control technology, typing dozens of words per minute [3][5]. - He announced that over the past 20 months, he has funded more than 50 million in research projects, collaborating on numerous scientific initiatives. He believes that miracles are happening, with patients who were previously expected to die now recovering [4][5]. - Cai Lei expresses a strong will to continue fighting against ALS, stating he would rather "fight to the death" than succumb to the disease without dignity [4].

Core Viewpoint - The article discusses the current health condition of Cai Lei, a former vice president of JD.com, who is suffering from ALS (Amyotrophic Lateral Sclerosis) and has lost his ability to speak and move, but continues to lead his team through eye-controlled technology [2][3]. Group 1: Health Condition - Cai Lei has completely lost his ability to speak and has limited mobility, only able to consume liquid food [2]. - His wife, Duan Rui, expressed her feelings of loneliness if he were to pass away [2]. - Cai Lei confirmed his condition on social media, stating he is experiencing daily physical challenges but remains mentally engaged in his work [2]. Group 2: Work and Research Contributions - Despite his physical limitations, Cai Lei is still actively managing his team and handling various operational tasks through eye control technology [2][3]. - He has announced over 50 million yuan in research funding for external projects over the past 20 months, indicating a strong commitment to advancing research in his field [2]. - Cai Lei believes that miracles are happening in the treatment of ALS, with previously terminal patients now recovering, and he sees this as a pivotal moment for AI and life sciences [2]. Group 3: Communication and Workload - Cai Lei's assistant reported that he communicates effectively using eye control technology, typing dozens of words per minute [3]. - Although his work intensity has decreased, he still participates in online research meetings and manages to work daily, balancing work with necessary rest periods [4]. - His cognitive abilities remain sharp, allowing him to contribute meaningfully to his team's efforts [4].

Core Viewpoint - The article highlights the current condition of Cai Lei, a former vice president of JD.com, who is suffering from ALS (Amyotrophic Lateral Sclerosis), emphasizing his ongoing efforts in research and leadership despite his deteriorating health [1][2][3]. Group 1: Health Condition - Cai Lei has completely lost his ability to speak and is experiencing severe physical limitations, including paralysis and difficulty swallowing [1][2]. - His wife, Duan Rui, reported that he can only consume liquid food and may require a gastrostomy in the future to address his dietary needs [2][3]. Group 2: Ongoing Work and Contributions - Despite his health challenges, Cai Lei continues to manage his team and oversee various operational tasks using eye-tracking technology [2]. - He announced over 50 million yuan in research funding for ALS projects over the past 20 months, indicating a commitment to advancing scientific research in this area [2]. Group 3: Recognition and Support - Cai Lei was awarded the title of "National Self-Reliance Model" on May 18, which he described as a significant honor that encourages both him and the broader ALS community [4]. - On his 47th birthday, his family celebrated with him, and there was a strong community sentiment expressing hope for miraculous outcomes in his condition [6].

Core Points - The article discusses the deteriorating health condition of Cai Lei, a former vice president of JD.com, who has lost his ability to speak and move due to amyotrophic lateral sclerosis (ALS) [1][3] - Cai Lei was diagnosed with ALS in 2019, a rare and currently incurable disease that leads to muscle atrophy and eventual death [3][4] - His wife, Duan Rui, highlights the emotional and physical struggles they face, indicating that Cai Lei may soon require a gastrostomy for nutrition [3] Summary by Sections Health Condition - Cai Lei has completely lost his ability to speak and has significant loss of strength in his arms and legs, requiring assistance to stand [3] - He can currently consume only soft food, and there are concerns about future nutritional needs potentially requiring surgical intervention [3] Background Information - Cai Lei was born in May 1978 and served as the vice president of JD.com [3] - He established the "Gradual Recovery Mutual Aid Home" to create a medical big data research platform for ALS patients, connecting thousands of patients [3][4] - Under his initiative, the first pathological research gene sample bank for ALS in China was established, contributing to genetic research on the disease [4]

Core Viewpoint - The article highlights the significant contributions of Dr. Fan Dongsheng in the research and treatment of Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease, emphasizing the hope brought by new drug trials and the importance of patient involvement in clinical research [1][2][4]. Group 1: Dr. Fan Dongsheng's Contributions - Dr. Fan Dongsheng is a leading expert in ALS research in China, having treated over 10,000 patients and established the world's largest ALS patient database with over 5,000 entries [2][3]. - He emphasizes the importance of providing hope to patients while being honest about their conditions, often reassuring them about their overall health status [3][4]. - Dr. Fan has been involved in the development of new drug trials, which have become a source of hope for patients who have exhausted other treatment options [5][8]. Group 2: New Drug Trials and Research - Recently, Dr. Fan has led multiple clinical trials for new ALS drugs at Peking University Third Hospital, including a drug developed in collaboration with Tsinghua University, which received approval for clinical trials in August 2023 [8][9]. - There are currently nearly 10 ALS drug trials underway at the hospital, including both international and domestic drug development efforts [10][11]. - The article notes that ALS drug development is particularly challenging, with only a few drugs successfully reaching the market in the past decades, highlighting the need for continued research and investment in this area [10][11]. Group 3: Patient Involvement and Data Collection - Dr. Fan has established a new data platform that allows ALS patients to upload their health information, significantly increasing the amount of real-time data available for research [21][24]. - The platform has collected over ten thousand data points, doubling the previous data collected over two decades, which aids in the rapid recruitment of patients for clinical trials [21][24]. - The article emphasizes the importance of precise patient selection for clinical trials, as different ALS subtypes may respond differently to treatments, thus improving the success rates of trials [12][14]. Group 4: Community and Advocacy - Many of Dr. Fan's patients have become advocates for ALS awareness and research, contributing to community support and fundraising efforts [17][20]. - The article highlights the role of patients like Liu Jijun and Cai Lei in promoting ALS research and support networks, showcasing the impact of patient-led initiatives [17][20]. - Dr. Fan's approach to patient care includes not only medical treatment but also fostering a supportive community among ALS patients, which is crucial for their mental and emotional well-being [16][18].

Core Insights - Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig's disease, is characterized by the gradual loss of motor neurons in the brain and spinal cord, leading to muscle atrophy and loss of motor function [2][3] - ALS is classified as a neurodegenerative disease, similar to Alzheimer's and Parkinson's, and is currently considered incurable, with treatment focused on stabilizing or delaying the progression of the disease [2][3] Drug Availability - Currently, there are "two and a half" drugs available for ALS treatment: Riluzole from Sanofi, Edaravone from Mitsubishi Pharma, and Tofersen from Biogen, which is effective for only 2% of patients [4] Patient Symptoms and Disease Progression - Early symptoms of ALS may include insomnia, anxiety, and weight loss, with later stages leading to speech difficulties, swallowing issues, and abnormal bowel and bladder function [5][9] - The disease progresses rapidly, with many patients having a life expectancy of around five years post-diagnosis [4] Quality of Life Improvement - Early diagnosis and treatment are crucial, as the average delay in diagnosis has historically been 10-11 months, but awareness is improving, allowing for earlier intervention [6] - Early diagnosis is also vital for new drug development, as clinical trials often require early-stage patients [6] Disease Mechanisms and Triggers - The exact causes of ALS remain unclear, but potential mechanisms include excessive neuronal excitation, insufficient energy metabolism, and oxidative stress [9][10] - Factors such as weight loss, high-altitude exposure, and physical or mental stress can accelerate the onset of ALS symptoms [9][10] Misconceptions and Myths - There is a condition known as "pseudo-ALS" that mimics ALS but has a clear cause and can be treated effectively, with about 5% of suspected ALS cases falling into this category [11] - The placebo effect is a significant concern in ALS treatment, as patients may perceive improvements that are not clinically substantiated [11] Technological Advancements - Brain-computer interfaces could significantly enhance the quality of life for ALS patients by enabling communication and interaction with the outside world, especially in advanced stages of the disease [12]