Pd is so wide ranging with doctors absorbed in their own specialisms. I'm guessing there are lots of studies world wide doing the same research and missing out on neglected area.
Who's the international guy at the top with the holistic overview of all PD research to stop the asynuclein type hole
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CuriousMe12
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Very good point and at least one of the authors has raised similar questions with regard to this one-sided view more than once. And the risk of most of the PD-research aiming to prove the same hypothesis is even greater if you consider that a (possible) PD-diagnosis as such is going to be defined as a broad spectrum, whereby your 'alphasynuclein riskprofile' will determine whether to prescribe drugs to diminish the risk (!) of developing PD later in life...
The core issue is the relative lack of public money being dedicated to the issue. We need fulltime permanent researchers - and a lot of them - on government payroll that can explore every rabbit hole down which the facts lead, no matter how unlikely that path is to produce a treatment in the next 10 or 20 years. Whilst the job is left up to drug companies - whose owners expect short to medium term results - we will never solve what is fundamentally a long term problem. Well, we might, but it'll take longer and an awful amount of luck will be involved.
And the challenge with getting public money is that most voters simply don't care about it. Indeed, there are members of this very forum that in one breath will complain that PD hasnt been cured yet, yet in the next breath will proudly advocate for the side of the political spectrum that has done nothing but gut(or attempt to gut) public spending on medical research.
I agree but cant see it ever happening in the uk as even the main opposition party that is supposed to support the NHS is partly sponsored by big pharma and privatizing through the back door.But even if political parties can't be relied on and it comes down to economics. Surely it makes sense for an international overview body that can generally understand all research and guide the future direction, avoid duplication ànď misseď opportunities.
I disagree about Asyn studies. In studies I have seen, I have found a very significant list of supplement Asyn inhibitors and or Asyn aggregation inhibitors. The studies may not all be PD specific, but the effects are relevant in PD and of course melatonin is an Asyn assembly inhibitor as well as an Asyn aggregation inhibitor as discussed here in this 2023 review that delves into the multiple methods of action that melatonin exercises against PD pathologies :
' The effectiveness of melatonin (MLT) in the restoration of dopaminergic neurons in the substantia nigra (SNc) has been established. MLT can upregulate dendritic numbers and restore synaptic plasticity by inhibiting alpha-synuclein aggregation and neurotoxicity. '
This study shows that melatonin inhibits Asyn assembly :
' For example, melatonin inhibits α-synuclein assembly and attenuated kainic acid-induced neurotoxicity (186) and arsenite-induced apoptosis (187). Melatonin also impaired the augmented expression of α-synuclein in DA containing neurons following amphetamine administration (188, 189). Melatonin blocked α-synuclein fibril formation and destabilized preformed fibrils by inhibiting protofibril formation and secondary structure transitions and by reducing α-synuclein cytotoxicity (169, 190). '
Melatonin has a very good safety profile in humans even at high dosing levels and is relatively inexpensive. Human studies are lacking for this specific effect of melatonin, but melatonin has already shown that it can return the elevated oxidative stress levels of people with PD to healthy control levels at just 50 mg/day as discussed in the following study :
' At baseline, the activity of mitochondrial complex I and the respiratory control ratio were significantly lower in PD patients than in the healthy control group (Figures 2(a) and 2(b), respectively). Compared with the placebo group, the melatonin group showed significant increases of both parameters after 3 months and reached values similar to the healthy control group. '
Asyn is affected by and contributes to oxidative stress. Therefore it is very useful to return elevated oxidative stress levels back to healthy control levels.
Look at this relevant graph from the study on this page that illustrates how 50 mg/day of melatonin returns oxidative stress markers to healthy control levels.
Art
Melatonin returns oxidative stress markers back to healthy control levels.
There is an urgent need for an international body controlled by patient need and adventurous exploration rather than profitable outcomes.
There is zero research on the known causes, zero research on those who have reversed PD and now live with few or no symptoms, and the list goes on.
This is a comment I wrote in 2020 and there an even more urgent need now:
WHAT DO WE NEED NOW?
Parkinson’s Associations around the world estimate that between seven and ten million people are diagnosed with Parkinson’s disease. This does not include those in the prodromal phase and/or undiagnosed.
This is an enormous drain on resources in treatment and care costs, and loss of expertise and productivity. Even more importantly, this represents over seven million people living with fear and misery, perhaps unnecessarily.
Parkinson’s Australia commissioned Deloitte Access Economics in 2014 to prepare a report on the costs of Parkinson’s disease in Australia. This report, available online 1, estimated the annual cost of Parkinson’s disease to the Australian economy at nearly 10 billion dollars! The number of people affected in Australia was estimated at between 81,000 and 110,000. As the incidence of Parkinson’s disease and the economic costs rise each year, these figures will be significantly exceeded by the time this is published.
A very interesting section of this extensive report is section 2.2 “What Causes PD?”. While describing Idiopathic or Primary Parkinson’s Disease as having no known cause (section 2.1.1), the report goes on in section 2.2 to describe several possible causes including accelerated aging, oxidative damage, environmental toxins, genetic predisposition (for some reason indicating Alpha synuclein as a gene instead of a protein). There are also some risk factors described including male gender, Caucasian ancestry, herbicide/pesticide exposure, rural residence, higher intake of dietary fats (without distinguishing the type of fats), metal exposure (without detailing which metals), family history, stress, depression and head trauma (Hauser et al, 2015; NINDS 2014).1
Some protective factors listed include consumption of antioxidants, early-life measles infection, consumption of food and drink containing niacin and caffeine, and smoking (Hauser et al, 2015; NINDS 2014).1 While the smoking and caffeine research have been largely discredited and niacin is proving of limited benefit, the link of better health and lower disease risk with dietary factors and lifestyle, and ways to mitigate known risks have been almost completely ignored in the push for a “cure” or drugs to better control symptoms.
It is time to look beyond the strictures of the WAM view of one disease, one cause and one cure. In a world staggering under the burden of chronic illness, with ever-increasing rates of Parkinson’s disease and related neurodegenerative disorders, we have a responsibility to put aside preconceived ideas, tunnel vision, dogmatic commercial propaganda and bigotry to fully explore all aetiological pathways leading to diagnosis with neurodegenerative disorders, including Parkinson’s disease, and all rational, non-toxic strategies to reverse those processes.
Yes. So most natural alternatives are left to individual self help.This Movers and Shakers podcast 5 mins in has a UK neurologist who thinks drugs are only part of the solution :
• to look beyond the selfishness and self-serving paradigm of cause-disease-cure to explore a broader concept of wellness creation becoming more powerful than disease creation and maintenance;
• to embrace all forms of medicine and wellness strategies as part of a cooperative and powerful move towards a healthier and happier society.
RESEARCH:
• analysing the benefits or harm of all food groups and preparation processes on our health through life;
• cell hydration, benefits and strategies;
• extensive analysis of the aetiological pathways explored here and others that may become significant during aetiological pathway research;
• independent investigation of environmental toxins removed from the control or influence of the manufacturers and vested interest;
• lifestyle strategies for wellness and how best to construct education campaigns to encourage the general population to live well;
• practitioner/patient relationships that help or harm;
• much more.
LEADERSHIP:
• illness has people like Michael J Fox, Clyde Campbell and Liz Cantor who dedicate themselves to improving lives of those living with Parkinson’s disease and ongoing research. This leadership, altruistic and with the best of intentions, is based on the premise that Parkinson’s disease is a discrete and individual disease and that only Western Allopathic Medicine can find a “cure”;
• we need people of this stature to promote the concept of wellness and to help raise funds for the research above;
• without such leadership, we will struggle to move out of the dominance of “cure profitability” strategies.
INNOVATION:
• a new look at evidence. The “Gold Standard” for evidence promoted by Western Allopathic Medicine is a double-blind, randomised, placebo-controlled trial with a large population. However such trials are open to manipulation and abuse and, because of cost, are often short-term. Furthermore, many wellness strategies (e.g. dietary changes) do not lend themselves to such trials.
• we need a wide range of highly-qualified people from Western Allopathic Medicine and Complementary/Alternative Medicine to develop innovative research methods that will provide realistic and reproducible results;
• we need new ways to interpret past and current trials that do not necessarily prove what is claimed;
• we need innovative ways to reach people at risk of neurodegeneration in order to alleviate the burden of disease on them, their families and society;
• we need innovative use of social media and public broadcasters to foster an attitude of wellness as we age instead of an expectation of illness;
• new Centres of Excellence focusing on wellness strategies and self-help strategies in place of those teaching us how to “live with illness”.
DISCOURSE:
• open and respectful conversations between Western Allopathic Medicine and Complementary/Alternative Medicine practitioners and researchers exploring the contribution all forms of medicine and research can offer to People with Parkinson’s and those in the prodromal period;
• cessation of abuse and denigration of Complementary/Alternative Medicine practitioners and researchers by Western Allopathic Medicine and its pharmaceutical-sponsored “support” organisations;
• a public move by Western Allopathic Medicine to distance itself from rambunctious anti-health campaigners misquoting dubious studies to denigrate Complementary/Alternative Medicine healthcare practitioners;
• engagement of government agencies like the National Health and Medical Research Council in Australia, and similar bodies in other countries, with Complementary/Alternative Medicine practitioners and researchers as equal partners in the work to improve the health status of all people in our society;
• a change of language to promote and focus on lifestyle and self-help strategies to promote health throughout life rather than just treating illness or using drug therapy to prevent one illness with methods that may cause other illnesses.
FUNDING:
• of all medical/health research funding, less than one percent is spent on prevention research;
• that prevention research is largely dominated by Western Allopathic Medicine and so generally focuses on vaccine/drug prevention of single illnesses (often with unintended adverse effects) or outdated lifestyle/dietary strategies;
• we need funding for genuine and clinically supported lifestyle and dietary prevention strategies that is untied. Currently most funding is provided by non-pharmaceutical companies seeking to promote dietary supplement products, practitioners with particular interests or rare benefactors;
• national governments have a responsibility to enhance the health of their constituents (a responsibility most governments neglect in favour of illness treatment) and must allocate a much greater percentage of research funding to prevention research distant from vested interest, with guidance from Western Allopathic Medicine and Complementary/Alternative Medicine in equal measure;
• we urgently need Centres of Excellence focused on providing and teaching lifestyle and dietary strategies to enhance health and prevent disease. Currently all these centres are privately owned and funded by client contributions, which places access beyond all except those with a high degree of disposable income;
• all governments should allocate at least one percent of their health/illness budget each year to prevention research and education with equal voices from Western Allopathic Medicine and Complementary/Alternative Medicine. In Australia, this would mean, in 2019, 1.5 billion dollars spent on prevention strategies and research, ultimately yielding an ever-decreasing burden of health/illness care on the economy. I realise that this objective is in the realm of building fairy gardens to entertain politicians in their dotage and there is no political profit or benefit in preventing illness (it is really hard to publicise something that doesn’t happen). However, perhaps there are one or two altruistic politicians who will push for a much greater allocation of funds for illness preventing and life enhancement.
We CAN achieve some or all of these needs if we all focus on wellness and illness prevention, talk openly to our Western Allopathic Medicine and Complementary/Alternative Medicine practitioners, politicians and business leaders. One person is a whisper, a thousand people is a murmur, seventy thousand people (1% of those diagnosed with Parkinson’s disease) demands attention, one million people constitute a roar that will be heard around the world. It starts with you and me.
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