Advocacy Feedback Inquiry

[Dakota15]

Hey PR,

I post on here only from to time, but I've always been impressed at the engagement & knowledge on here.

I advocate with several patient organizations (#MEAction, Long COVID Alliance, Solve ME, Minnesota ME Alliance mainly) to advance progress. Yesterday a topic was brought up in a meeting with an organization & I'd love to get feedback from any on here.

A long-time advocate & leader in this field noted that there has been a backing away, fewer volunteers in her opinion, even despite how Long COVID has brought an emergence to ME/CFS & post-viral illnesses in a fairly profound way.

My questions for anyone here willing to discuss. This isn't for a single organization, more-so for the broader scope of ME advocacy in general:

• How can we get advocates to staying involved and encourage action? How can we engage newcomers to get involved?

We know social justice & advocacy movements are a marathon & not a sprint - generations passing the baton from one another towards progress. We know the more that are involved, the greater chance for advancements and for our voices to be heard (i.e. "where there's people, there is power"). I also acknowledge that advocacy is an emotional & physical expenditure, for an insidious illness that punishes exertion.

Open to any feedback from the knowledgeable base on here.

Personal/biased note - I've drawn a lot of inspiration from the fellow dedicated advocates in this cause and if anyone is on the fence of getting involved or interested in doing more, my DM's are open to talk further or answer any questions.

 

[andyguitar]

A long-time advocate & leader in this field noted that there has been a backing away, fewer volunteers in her opinion,

Due to the pandemic perhaps?

 

[Dakota15]

Certainly could be one factor to acknowledge, @andyguitar

 

[nerd]

The issue with ME and engagement, I think, is co-suffering. There's this circle of negative experiences, let it be from research, from officially, from the medical or psychiatric community, from know-it-alls, from the stigmatization, and wherever you go, there seems to be an invisible wall.

Advocates might co-experience this and this is probably quite a burden for the average person. Especially carers suffer so much with the patients, more than they deserve. Advocacy is meant to give them control back, isn't it? But sometimes, it's just a repetition of the same patterns and this is difficult long-term.

I think what really helps is a positive feedback cycle. Not towards the public, because they deserve to know the plain facts how miserable the funding and the whole situation is. But for advocates, every small success can be just the bit they need. Every single step. It might just be a single step, but the efforts that go into are immense and this is how the success should be measured. It should be measured by the size of the obstacle.

But the question is how there can be more success experiences, on an everyday basis. Communication with the patients might be helpful, to point out their positive feedback and how much it means to them. Because many patients can't be heard, they can't give direct feedback as it might be the case with other causes.

For example the publishing of the NICE guidelines. It's just a simple tiny thing but the magnitude of it is immense. Who knows how many thankful voices can't be heard once it's finally published.

Maybe some lessons could be learned from LGBTQ and the HIV pandemic, but I'm not a direct witness of this movement, when it began.

 

[BrightCandle]

I can't speak for others but fundamentally for me it boils down to whether I perceive these groups as helpful. I have never contacted an advocacy group because I don't see anyway they can help, they don't know anymore about the disease than anyone else and the websites largely seem to about raising money. The advocacy videos I keep seeing from MEAction I think are pretty bad and have very little exposure, what is happening just doesn't work the strategy isn't producing. I have entered into a scene where what I see is advocacy groups have had the NICE guidelines change so dangerously on their watch and spent a decade ineffectively failing to change those guidelines, NICE changed not really because of patient advocacy but because they realised the evidence was terrible after a court case. Lawyers representing ME patients that looks like it works. I am also seeing a research community largely reprinting the same research results 2 years later as if nothing has changed. None of it looks like it works to me and nothing has really changed in the 2 years or so I have been looking at ME being my problem.

I would rather focus my efforts on researching with experimentation on myself on the findings others. This has been the route to an improvement in quality of life and finding genuinely biological things I can do something about. This helps me, phoenix rising and its inhabitants help me. I see the benefit, I wish to reproduce their results or not and I can see the value in that immensely.

Advocacy groups on the other hand have participated in the NICE roundtable have not helped me, they may have led to a continuation of danger for ME patients in the UK by allowing this farce to continue. This is why I don't care for them, I see advocacy groups cooperating with those who advocated for patients to be tortured and frankly I am not inclined to negotiate with those that hurt me about the extent to which they might not hurt me in the future. I see the existing official structures for ME support and research as basically useless so far, ineffective even harmful and not worth wasting time with.

 

[wabi-sabi]

have very little exposure

When I feel down, this is what I feel down about. We are all preaching to the choir in our own little twitter worlds, but not really reaching out to the wider world. This is what starts to feel so wearisome for me- the feeling that we are just talking to ourselves over and over.

Now, I'm not sure how to move beyond our own social circles, but I think @nerd 's idea is a good one- Take a page from the AIDS activists. They overcame enormous stigma and got treatment for their disease. Something similar happened in the cancer world too. We need to learn and apply those techniques. Then activism would feel more positive and productive and I think more people would want to be involved.

 

[Pyrrhus]

I think it's important for organizations to talk to their volunteers.
And listen to them. That goes a long away towards retaining volunteers.

 

[Bronc]

When I feel down, this is what I feel down about. We are all preaching to the choir in our own little twitter worlds, but not really reaching out to the wider world. This is what starts to feel so wearisome for me- the feeling that we are just talking to ourselves over and over.

Now, I'm not sure how to move beyond our own social circles, but I think @nerd 's idea is a good one- Take a page from the AIDS activists. They overcame enormous stigma and got treatment for their disease. Something similar happened in the cancer world too. We need to learn and apply those techniques. Then activism would feel more positive and productive and I think more people would want to be involved.

I agree we have to try and move beyond our social circles. The work of Disabled People Against The Cuts (DPAC) is a model we could learn from. DPAC have taken their campaigns to the streets and got alot of publicity both good and bad for their actions. The recent small protest (20 people) outside NICE HQ organised by Chronic Collaboration gives me hope and encouragement. As a community we need to increase our visibility and be seen to having an impact. Family and friends of pwME can come along to such protests to enhance their visibility.

Making alliances/coalitions with other groups outside the ME community can also be of great help

It is hard to keep activists/advocates when times are tough and it appears you are making little progress. That is why it is important to foster a strong caring and resilient community spirit that can keep people going.

 

[Bronc]

I can't speak for others but fundamentally for me it boils down to whether I perceive these groups as helpful. I have never contacted an advocacy group because I don't see anyway they can help, they don't know anymore about the disease than anyone else and the websites largely seem to about raising money. The advocacy videos I keep seeing from MEAction I think are pretty bad and have very little exposure, what is happening just doesn't work the strategy isn't producing. I have entered into a scene where what I see is advocacy groups have had the NICE guidelines change so dangerously on their watch and spent a decade ineffectively failing to change those guidelines, NICE changed not really because of patient advocacy but because they realised the evidence was terrible after a court case. Lawyers representing ME patients that looks like it works. I am also seeing a research community largely reprinting the same research results 2 years later as if nothing has changed. None of it looks like it works to me and nothing has really changed in the 2 years or so I have been looking at ME being my problem.

I would rather focus my efforts on researching with experimentation on myself on the findings others. This has been the route to an improvement in quality of life and finding genuinely biological things I can do something about. This helps me, phoenix rising and its inhabitants help me. I see the benefit, I wish to reproduce their results or not and I can see the value in that immensely.

Advocacy groups on the other hand have participated in the NICE roundtable have not helped me, they may have led to a continuation of danger for ME patients in the UK by allowing this farce to continue. This is why I don't care for them, I see advocacy groups cooperating with those who advocated for patients to be tortured and frankly I am not inclined to negotiate with those that hurt me about the extent to which they might not hurt me in the future. I see the existing official structures for ME support and research as basically useless so far, ineffective even harmful and not worth wasting time with.

You make many good points. I've been involved over the last 30 years in a variety of campaigning groups. One thing many had in common was a big emphasis on raising money just to keep the organisation going. The biggest exception to that was my union. Even there, the emphasis was mainly on tedious uninspiring matters that had little impact on members. The only time more people got involved/joined the union was when the union was taking action to defend/improve members working life.

The same principle applies to ME activism. I'm tired of complaining how difficult/tough things are. I want to participate in more impactful campaigns. You make a great point how the collaboration of advocacy groups with the medical establishment through the round table fiasco makes them redundant.

Why would you want to get involved in a group that is not challenging the medical abuse/conscious neglect of the establishment and which gets you no where?

 

[Learner1]

I've talked with a number of people who, in general, don't feel that the advocacy groups are doing much to improve the care of patients.

It's one thing to advocate for research funding, but patients are suffering every day, losing their livelihoods and ability to participate in normal life. When were asked to advocate it's for things that are very remote to our day to day life and our ability to get better.

I was recently struck by the utterly missed opportunity of MEaction's response to the CDC. We all know that CBT and GET are bad, but how about advocating for treatments that do help at least subsets of patients - like antivirals, antibiotics, immune modulators, autoimmunity treatments, treatments that improve metabolomics, hormones, mitochondrial nutrients, hyperbaric oxygen, anticoagulants, etc? Sone days, it seems like we're our own worse enemies.... Or, if these are our friends...we are losing hope.

Most people would advocate for better care and meaningful assistance for those suffering now.

 

[wabi-sabi]

Making alliances/coalitions with other groups outside the ME community can also be of great help

I feel this is also very important. Ultimately the problems with healthcare affect all patient groups. The main problems I see across conditions are gaslighting and psychologization. This isn't always about ill will on the part of medical people. SOmetimes their education, good as it is in other areas, really is lacking in the lived experience of chronic illness. This is something that many patient groups could work togeher on.

 

[wabi-sabi]

Most people would advocate for better care and meaningful assistance for those suffering now.

This is also an interesting perspective. I feel it's a question of two-pronged advocacy: research and immediate care for the suffering. I've been very happy with all these orgs' work on the research front, but maybe there could also be a focus on patient care.

We'd need to have some discussions around what needs to be done and what approach to take. I think that could be fruitful.

 

[Bronc]

This is also an interesting perspective. I feel it's a question of two-pronged advocacy: research and immediate care for the suffering. I've been very happy with all these orgs' work on the research front, but maybe there could also be a focus on patient care.

We'd need to have some discussions around what needs to be done and what approach to take. I think that could be fruitful.

One issue that I tried to raise with ME Action was the need to help pwME with applications for disability benefits. They were not interested in the slightest.
There is a dire lack of support when it comes to navigating the punitive benefits system in the UK.The Tory government has plans to 'reform'. what a sick joke, disability benefits over the next few years with the possibility of merging PIP and ESA.
The Tory government has plans to put disabled claimants under alot more pressure to get jobs.You can't make this stuff up. I would love to go back to my old job but I need a cure for this hellish illness. How about putting money into finding a cure for ME and then I won't have to 'sponge' and 'scrounge' (Tory words not mine) off the state anymore.

Support for pwME to help them navigate/access the benefits system is something I would like to work on with a group of like minded people.

 

[wabi-sabi]

How about the MN ME/CFS Alliance working with MDH to educate health professionals? The Massachusetts group tries to do something like this and it sounds like a good idea. It would also help with alleviating suffering more directly while we wait for research.

 

[Learner1]

How about the MN ME/CFS Alliance working with MDH to educate health professionals? The Massachusetts group tries to do something like this and it sounds like a good idea. It would also help with alleviating suffering more directly while we wait for research.

Not meaning to be impertinent, but what does the MN ME/CFS Alliance know about educating health professionals? Any group trying to do this should be using the best of what's successful on the trenches. It would be lovely if we could depend on the Clinicians Coalition document, but unfortunately, it's the least common denominator, a very conservative approach that omits many successful tests and treatments. And the CDC guidance is worse...

 

[wabi-sabi]

Not meaning to be impertinent, but what does the MN ME/CFS Alliance know about educating health professionals?

I am thinking along the lines of using the successful strategies that the MassME group uses. I have been very impressed with their presentation yesterday, and their collaboration with the Dept of Health in Massachusetts for the presentation on invisible disabilities.

I am not suggesting that any of these patient groups rewrite the clinician coalition document, since that requires clinical expertise. What the patient groups can do is organize the conferences, gather the healthcare providers in the state (with collaboration from public health departments or professional bodies), and bring in the ME/CFS experts. Think of all those wonderful conferences put on at Stanford a few years back. That's the sort of thing that patient support groups could be organizing.

Yes, the scientists and doctors need to do their work and create their presentations, but someone (like us, MN ME/CFS Alliance, or MassME) needs to organize the conferences, publicize them with the right people, and get them accredited for continuing education hours. And of course run the bake sale to fund the conference...

 

[wabi-sabi]

Here's an educational opportunity some patient group could take on. The Sport and Society Conference is looking for papers and presenters on loads of topics, one of which is sport and health. This is an opportunity to get the word out about ME/CFS and the problem of exercise and GET.

https://sportandsociety.com/about/t...m_medium=R22B_danUNV&utm_campaign=R22B_danUNV

 

[Learner1]

I am thinking along the lines of using the successful strategies that the MassME group uses. I have been very impressed with their presentation yesterday, and their collaboration with the Dept of Health in Massachusetts for the presentation on invisible disabilities

Yrs, they do a great job.

I am not suggesting that any of these patient groups rewrite the clinician coalition document, since that requires clinical expertise.

Unfortunately, there is a significant lack of clinical expertise in treating ME/CFS as we are all keenly aware. The Clinicians Coalition document is authored by the top experts, and it is sorely lacking, partly as it seems to be the least common denominator of what those docs could agree on. There are several treatments they prescribe their own patients that are missing from that document and they mistakenly warn, 3 separate times, to not prescribe hydrocortisone, which has helped a great many of us.

Then there are treatments that functional medicine doctors, who are left out of that exalted circle but who've been helpful to many of us, that have been prescribed for their shared patients.

The problem with this is that patients have clusters of multiple problems out of a common list of maybe 25 separate things, with individual genetics and environmental situations complicating things. What needs to be presented is a large toolbox of tools, with some thoughts of how they may best be prescribed - what test results or situations point to a need.

And, on many cases, we patients are better experts on this than our doctors, because we live with this every day, try things and communicate with each other.

What the patient groups can do is organize the conferences, gather the healthcare providers in the state (with collaboration from public health departments or professional bodies), and bring in the ME/CFS experts. Think of all those wonderful conferences put on at Stanford a few years back. That's the sort of thing that patient support groups could be organizing.

Agreed.

Yes, the scientists and doctors need to do their work and create their presentations, but someone (like us, MN ME/CFS Alliance, or MassME) needs to organize the conferences, publicize them with the right people, and get them accredited for continuing education hours. And of course run the bake sale to fund the conference...

No, Whole I agree that researchers and doctors should share information, there is a lot to be learned that is not in the content they provide. The researchers have made numerous findings that are not being used by the ME/CFS Clinician's, unfortunately. However, many of us have been working with whatever other doctors who will help us to investigate these theories on an n=1 basis and figure out what tests we can run and treatments that we can try, with many successes, and admittedly, many failures. This body of clinical learning is ignored, but can be quite insightful.

I think patients can do more than busily organize conferences...

 

[wabi-sabi]

I think patients can do more than busily organize conferences...

Sure, we can.

But I think the work and benefit of organizing a conference shouldn't be underestimated. We're always complaining that the info we need isn't getting out to the medical community. One of the main ways that they communicate with each other is conferences. We sure aren't getting anywhere tweeting to each other and posting on websites. We need action in the real world-to the extent that we are able of course.

 

[nerd]

We need action in the real world-to the extent that we are able of course.

Though real world and online business aren't separate entities anymore.