Solve ME sent out email reminder for their next webinar: Full details and registration link here: https://solvecfs.org/event/cdc-update-recent-strides-in-long-covid/ Find the time in your time zone here: https://www.timeanddate.com/worldcl...binar:+CDC+Update&iso=20230329T10&p1=137&ah=1
Meet the Members of Solve’s New Lived Experience Task Force (LET) https://solvecfs.org/meet-the-members-of-solves-new-lived-experience-task-force-let/
From a Solve M.E. email: Announcement here: https://solvecfs.org/event/38107/ Register here: (this link includes a time zone conversion tool) https://us02web.zoom.us/webinar/register/WN_WE2pepSrQoSmx420dn_A4w#/registration Video from the 2022 EmPOWER ME session is here: https://solvecfs.org/advocacy/empower-me/
From a Solve M.E. email - webinar on sleep issues is scheduled for Thursday, April 27 at 11 am Pacific time: Announcement here: https://solvecfs.org/event/effects-of-long-covid-and-me-cfs-on-sleep/ Register here: (this link includes a time zone conversion tool) https://us02web.zoom.us/webinar/register/WN_C-d6_Le1RAe-0j62e_5d1w#/registration
Solve Spearheads Call for New NIH Office for Infection-Associated Chronic Illness Research (IACIR) "This year, Solve is beginning one of our most ambitious advocacy projects to date — one which could alter the research landscape for ME/CFS, Long Covid, and other infection-associated chronic illnesses for decades to come. We’re calling for the creation of a new, dedicated office at the National Institutes of Health (NIH). This office would be responsible for overseeing and coordinating research and development efforts into infection-associated chronic illnesses within the NIH, accelerating research into a multitude of related illnesses, including ME/CFS, Long Covid, fibromyalgia, multiple sclerosis, chronic lyme disease, and POTS, among others. Currently, these diseases are funded across multiple centers and institutes without any method of synergy or oversight to avoid duplication. There is tremendous value in creating a centralized office to coordinate this research. The multi-systemic nature of infection-associated chronic illnesses requires that research stretch across multiple specialities, focusing not only on specific bodily systems, but the interactions between them. " https://solvecfs.org/solve-spearhea...on-associated-chronic-illness-research-iacir/
Solve Spearheads Call for New NIH Office for Infection-Associated Chronic Illness Research (IACIR) https://solvecfs.org/solve-spearhea...on-associated-chronic-illness-research-iacir/
This is seriously so disturbing it could derail SolveME's future efforts, wondering how the hell did they think this is a good idea and if they have their priorities set straight. Honestly between this and deciding to do a GET trial, I'm not entirely sure which would be the most absurd. It's beyond obvious that such an institute will need to happen, and it's too early to do the right thing, too much cultural blockage, but it will likely happen using AIDS research as the foundation and centered on immunology with lots of cross-disciplinary work. Frankly that AIDS continues to be its own thing separate from the rest is starting to become a bit embarrassing. It's way past time to build around those foundations and work out the impacts of chronic infections and the long-term impacts of infectious pathogens. Maybe they are trying for a compromise, sensing that doing it right the first time around is not politically viable, but we would be stuck with the consequences of building it wrong for too long. Again. This is one of the worst ideas to come out of the sane side of ME research in a long time.
I completely agree. I started out reading the email from SolveMe thinking 'great', and ending up groaning. Actively campaigning for Infection-Associated Chronic Illness Research to be in the Office of Research on Women's Health seems to be an own-goal. I would be very interested to understand their reasoning. It's not as if these chronic illnesses only affect women.
It sounds political to me, and it's possible there could be reasoning behind it. For instance, if they happen to know there are going to be big bucks available for a series of projects to redress the historic imbalances where research was always based on male bodies because female ones are too complicated, they may have taken it as a pragmatic decision. I'ms second-guessing, of course, and the real truth might be exactly as dumb as it sounds on first reading. But if it is a way to access bigger or longer-running grant programmes, the fact that it appears unlikely the perpetuating mechanism is completely different in men and women might mean there could be some merit in the approach? (Yeah, I know, I have a really annoying habit of looking for the positives. )
CFS, as it was known then, was originally housed in the National Institute of Allergy and Infectious Diseases (NIAID) until it was thrown out from there and landed in the Office of Research on Women's Health (ORWH). For many years, this move was decried by advocates as, unless things have changed, this is a very small office with a very small budget with very limited funding for research programs of any kind. "CFS" languished there for years. It was a happy day when it was finally taken out of this office. So, I find this idea from Solve quite shocking. I would like an explanation from Solve as to why they think going back to this is a good idea. Also, I find this insulting to the many who are not female but who also suffer from post-infectious chronic diseases.
Yes, I'd also guess this plays a role, go where the funding is. I don't think it's a bad idea per sé; reading Willow's comment above, I'm more worried if the ORWH can "carry" this project.
My understanding is as @Willow says, that this batting back and forth has done nothing but play into the hands of political opponents for at least the last ten years. I get the impression that Solve ME is run by people who don't actually have any understanding of the realities of medical research, or medical politics for that matter. This statement:'It is a common feature of infection-associated chronic illnesses to disproportionately impact women — ME/CFS impacts women 3-4 times more often than men. Like many autoimmune diseases, the predominant impact on women is cited as a factor for underfunding, dismissal and stigma.' is just a mish-mash of disinformation.
It is disheartening that Solve seem to have changed significantly for the worse. They used to be one of the best ME charities. I have no idea whether this is due to changes in senior staff and directors, or whether it is due to trying to become a Long Covid organisation as well as ME and losing the plot.
Only scanned - "accelerating research into a multitude of related illnesses, including ME/CFS, Long Covid, fibromyalgia, multiple sclerosis, chronic lyme disease, and POTS, among others." multiple sclerosis - we know the cause of most cases - it follows EBV infection, only 1 of 30 ish cases, in the US Army study, didn't follow EBV. As per Jonathan's comments you can treat multiple sclerosis using rituximab. Plus you can diagnose multiple sclerosis & there's a biomarker. Plus an EBV vaccine would prevent most cases (90+%)--- The remaining examples "ME/CFS, Long Covid, fibromyalgia, [delete multiple sclerosis,] chronic lyme disease" can be investigated via large genome-wide association studies (GWAS). Why don't Solve run a campaign highlighting that we can now make progress in diseases which are currently of unknow cause and have no treatment options ---GWAS and potentially whole genome sequences ++? Solve seem to be suggesting that we need a new Department --- a cynical bureaucrat might decide to go for that. Not to make any meaningful progress but to do some widow dressing! Guess that's what folks here are concerned about. Luckily Vicky Whittemore [NIH] won't follow this - she'll aim for genuine attempts to move things forward- "We are currently in the process of developing an ME/CFS Research Roadmap and Genomics/Genetics are one of the topic areas under discussion. We are aware of the studies you mentioned, and Chris [Ponting] is involved in the group that is discussing genomic/genetic research on ME/CFS. There will be a series of webinars open to the public in the coming months that will provide perspectives from experts in the field regarding research priorities for ME/CFS. If you are not already, you should sign up for the NIH email listserv so you receive notices of the webinar series; go to: https://www.nih.gov/mecfs" https://www.s4me.info/threads/deep-...ction-mina-nath-et-al-2023.33187/#post-474237
Solve ME email: Thank You for Another Spectacular Advocacy Week! Spoiler: Images from advocacy week It was so incredible seeing members of our community at Advocacy Week last month — both in person and virtually! Thank you so much for the energy and time you gave to fight for those with infection-associated chronic illnesses like ME/CFS and Long Covid. At a glance: your dedication shone through our 222 congressional meetings, with 354 attendees, and 47 states and DC represented! As we have read through the post-meeting reports, one theme that has come through strongly is that staffers on both sides of the aisle were engaged, open to hearing our stories, and wanting to find ways to support our community. If you’d like a detailed summary of the events, asks, and other updates, watch this special Advocacy Café Chat session with Solve M.E.’s Emily Taylor. Please take a moment to complete the survey linked below and share your thoughts or feedback. We would love to hear about your experiences and see your photos from Advocacy Week! Take Our Survey Here Continue Advocating Even if you didn’t participate in Advocacy Week, you can still get involved! Our remote action tool allows you to engage with your members of Congress using this link to send customized tweets, emails, and phone calls to help amplify our action. Advocates are encouraged to take action as many times as they like! We are rallying around the CARE for Long COVID Act in both chambers of Congress. This legislation seeks to increase research and expand resources for those struggling with Long Covid and related conditions, including ME/CFS and other infection-associated chronic illnesses. This year ME/CFS is specifically mentioned in the bill language as one of the key comorbidities which occurs alongside Long Covid. Our goal is to continue encouraging legislators on both sides of the aisle to support or co-sponsor the bills. Take Action Strengthen Your Advocacy With Our Long Covid Prevalence Chart Our advocacy team partnered with standout advocate Melissa Smallwood to create the Long Covid Prevalence Chart, which indicates what percentage of the adult population is living with Long Covid, state-by-state and district-by-district. Using CDC data from the Long Covid household pulse survey, the chart is further divided up into those with Long Covid living with activity limitations, and those living with significant activity limitations. These figures are a powerful resource for advocates. Data of this kind is often sobering and helps demonstrate how many people stand to benefit from legislation like the CARE for Long Covid Act. Find the Chart Here ICYMI: Watch Our Hallmark EmPOWER M.E. Event Online Hosting EmPOWER M.E. during Advocacy Week each year is one of our favorite ways to connect with our community after a long week of congressional meetings. This year, our Lived Experience Taskforce (LET) partners helped us choose our topic: Navigating the World with Energy Limiting Disabilities. This special event featured expert ME/CFS and Long Covid advocates sharing tips for overcoming personal, professional, and medical challenges. Watch Here
Caregiver Corner: Resilience Tools for Difficult Times June 26 @ 1:00 pm - 2:00 pm PDT https://solvecfs.org/event/caregiver-corner-2/ Registration link: https://us02web.zoom.us/meeting/register/tZIlcuuqrjIiG9ekiT1sgq-QGhKmTReK9gz2#/registration Find the time in your time zone here: https://www.timeanddate.com/worldclock/fixedtime.html?msg=Solve+M.E.+Caregiver+Corner:+Resilience+Tools+for+Difficult+Times&iso=20230626T13&p1=137&ah=1
I think I have to watch this. My reaction to the terms 'positive psychology', 'The New Happy Philosophy', 'resilience' etc. makes me groan and feel annoyed with the idea of Solve wasting its time and money on this stuff. And inflicting it on caregivers. Or, even worse, Solve being used to advertise a quack positive psychology business. As if we didn't have enough to cope with already, now we have someone invited to tell us - I suspect superficial nonsense - about how to be happy. Or even worse telling us we should be happy because we are serving our caree - with the corollary that if we're not outwardly happy we're doing it wrong. So are carers now going to feel inadequate or failures if they can't be perpetually radiating happiness. Happiness comes from deep inside the individual, often in unexpected moments, and can include quiet contentment, momentary relief from pain or worry, glimpses of beauty, ordinary things. I am very resistant to psychologists telling me techniques for manufacturing happiness. I await being enlightened with interest and a not completely closed mind...
Ugh. I've dug a bit more. Here's a link to her website. https://www.thenewhappy.com/about She sells her stuff to big companies and is writing a book. Her basic idea is that we're told material success brings happiness, but this is wrong, it's serving others that brings happiness. [Ideas as old as the hills, nothing new to see here, move along please!] And she has gimmicks like a daily email you can sign up for that has a piece of art and a piece of advice. She claims, of course, that it's all science backed. As I thought, a quack money spinner.
Yes, not so good this is aimed at carers specifically. But on a general level, I do think society has a problem with consumerism and all the advertising of material possessions as being seen as the way to happiness. And the US society has a bigger focus on consumerism than most societies. Also if people spend most or all of their free money on non-essential purchases, they may have little or nothing to donate to ME/CFS causes including research. Some people think governments should pay for all the necessary research but the budgets aren’t nearly big enough to do that and without private money, an illness can be left with fewer researchers to make grant applications particularly those with pilot data so may not get a “fair share” of government grant money.
