Hi @trenteliason i hope someone has already let you know about the Voices from the Shadows project here in the UK and all interviews they did a few years ago but I thought I’d post a link for you just in case
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What Doesn't Kill You [Forthcoming Documentary]
- Thread starter forestglip
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The rise and rise of the psychosomatic cult is the greatest and cruelest catastrophe in modern medicine.
If you can only get one message across in your film it is that patients are not the problem here. It is the medical profession, and broader governance, that have so grotesquely failed us, and are continuing to do so, with their pathological obsession with forcing psychosomatic/behavioural non-answers on us.
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Ravn
Senior Member (Voting Rights)
Welcome @trenteliason, great to see you here and engage. You come across as someone who wants to get this right and is sensitive to the issues
Speaking of sensitive, I’ve listened to a couple of the TikTok accounts and they highlight an extremely sensitive and tricky issue to navigate: the balance between letting people tell their own stories in their own words while not perpetuating misinformation
Many pwME - and some prominent ME doctors and researchers - have very definite and deeply held ideas about what ME is, in their mind: it is autoimmune, it is viral persistence, it is neurological, it is metabolic, it is this, it is that. Trouble is the science isn’t there yet, nobody knows what ME is (the real scandal here is that we haven’t had enough rigorous research to figure it out)
Similar for all the things people believe helped them. Some of these may be accurate observations albeit not necessarily generalisable from that individual, others may be cases of desperate people deluding themselves. In many other illnesses this wouldn’t matter too much but in the context of ME things are more delicate
In the ME context phrases like ‘it helped me’ or ‘important for the healing journey’ are not innocuous and neither are many of the recommendations by some of the prominent ME doctors. Often anything any pwME reports ‘helping’ is seized upon - by other pwME or the people around them - as something other pwME must try because maybe, just maybe it could improve the illness itself (rather than just help cope with it). The actual 'remedy' may be harmless enough - though some are not - but the endless pressure to chase yet another false hope can be noxious. It also places all the responsibility for finding solutions on the individual rather than where it belongs, i.e. the research and medical systems
The best solution here may be to avoid those two areas as much as possible and instead focus on the way people experience their illness, or caring for a pwME, including the impact of being left to fend for themselves, largely abandoned by the systems that are supposed to help. As a bonus that would also make the movie more emotionally impactful. Going by your posts that seems to be broadly the line you’re trying to take. I look forward to the result
Speaking of sensitive, I’ve listened to a couple of the TikTok accounts and they highlight an extremely sensitive and tricky issue to navigate: the balance between letting people tell their own stories in their own words while not perpetuating misinformation
Many pwME - and some prominent ME doctors and researchers - have very definite and deeply held ideas about what ME is, in their mind: it is autoimmune, it is viral persistence, it is neurological, it is metabolic, it is this, it is that. Trouble is the science isn’t there yet, nobody knows what ME is (the real scandal here is that we haven’t had enough rigorous research to figure it out)
Similar for all the things people believe helped them. Some of these may be accurate observations albeit not necessarily generalisable from that individual, others may be cases of desperate people deluding themselves. In many other illnesses this wouldn’t matter too much but in the context of ME things are more delicate
In the ME context phrases like ‘it helped me’ or ‘important for the healing journey’ are not innocuous and neither are many of the recommendations by some of the prominent ME doctors. Often anything any pwME reports ‘helping’ is seized upon - by other pwME or the people around them - as something other pwME must try because maybe, just maybe it could improve the illness itself (rather than just help cope with it). The actual 'remedy' may be harmless enough - though some are not - but the endless pressure to chase yet another false hope can be noxious. It also places all the responsibility for finding solutions on the individual rather than where it belongs, i.e. the research and medical systems
The best solution here may be to avoid those two areas as much as possible and instead focus on the way people experience their illness, or caring for a pwME, including the impact of being left to fend for themselves, largely abandoned by the systems that are supposed to help. As a bonus that would also make the movie more emotionally impactful. Going by your posts that seems to be broadly the line you’re trying to take. I look forward to the result
You have expressed that really well @Ravn. If a filmmaker is wanting to add some credibility to patients' claims of pain and hardship, the obvious people to go to are clinicians. There are ME/CFS specialists who will certainly talk to that subject, often very convincingly, but unfortunately almost all of them are offering diagnoses and treatments that are far from evidence based. Even if the film doesn't use footage of them talking about treatments, their presence in the film is effectively an endorsement of the treatments they offer to their patients.
Many of the acronym co-morbidities that you will hear people saying they have been diagnosed with are disputed - MCAS, POTS, hEDS... It's not that the symptoms that people have should be disputed, definitely not, rather, it's the labels that imply knowledge of the causal mechanism. We just don't know yet what is causing the illness.
Incidentally, that's one of the reasons why the Netherlands film project showing doctors who are now ill themselves worked well - they brought medical authority but also illustrated the shock of realising that lots of people have a horrible illness that no one knows much about.
Even then, doctors who come down with ME/CFS are not immune from grasping at the hope that causal diagnoses and treatments seem to offer. Pretty much all of us have done it at one time or another, believing that a particular treatment is helping, only to realise sometime later that it probably isn't.
Many of the acronym co-morbidities that you will hear people saying they have been diagnosed with are disputed - MCAS, POTS, hEDS... It's not that the symptoms that people have should be disputed, definitely not, rather, it's the labels that imply knowledge of the causal mechanism. We just don't know yet what is causing the illness.
Incidentally, that's one of the reasons why the Netherlands film project showing doctors who are now ill themselves worked well - they brought medical authority but also illustrated the shock of realising that lots of people have a horrible illness that no one knows much about.
Even then, doctors who come down with ME/CFS are not immune from grasping at the hope that causal diagnoses and treatments seem to offer. Pretty much all of us have done it at one time or another, believing that a particular treatment is helping, only to realise sometime later that it probably isn't.
Utsikt
Senior Member (Voting Rights)
With regards to the excellent points about what we know and mostly don’t know about ME/CFS, my view has been to think of it in terms of cancer.
If you made that statement about cancer - would it be considered appropriate to let it stand unchallenged or without context from an expert?
Take for example a person that says that they never use sunscreen and always look for the highest UV days to go tanning. In any news article about that person, an oncologist or the national cancer association would have the last say where they clearly explains that their approach is harmfull.
If someone claims that their cancer got better from eating differently and talking cold baths, an expert would also tell the readers that there is no evidence for this approach and that you shouldn’t reject treatments because of it. If you want to supplement with alternative approaches - go ahead as long as it doesn’t interfere with your other treatments. Because there are no treatments for ME/CFS, it gets even more challenging to reject the alternatives because there is nothing else for them to do (even though not doing something is also an action).
The issue with ME/CFS, as Ravn and Hutan mention, is that there are so many «experts» that have their pet theories, and patients latch onto them (especially as a defence against unfounded psychosomatic theories). This is especially challenging in journalism where a large portion of journalist firmly believe that their to role isn’t to challenge the experts (I’d argue that they have an ethical duty to seek the truth, and to only report on subjects where they have the ability to make a reasonable assessment - i.e. most of them should stay away from science).
But, as e.g. @dave30th, @Grigor and Sander Zurhake have shown shown, it’s possible to combine journalism/filmography and science. And your responses have been encouraging, @trenteliason
If you ever wonder if something is supported by the evidence, I’m sure plenty of members here would love to contribute to the discussion.
If you made that statement about cancer - would it be considered appropriate to let it stand unchallenged or without context from an expert?
Take for example a person that says that they never use sunscreen and always look for the highest UV days to go tanning. In any news article about that person, an oncologist or the national cancer association would have the last say where they clearly explains that their approach is harmfull.
If someone claims that their cancer got better from eating differently and talking cold baths, an expert would also tell the readers that there is no evidence for this approach and that you shouldn’t reject treatments because of it. If you want to supplement with alternative approaches - go ahead as long as it doesn’t interfere with your other treatments. Because there are no treatments for ME/CFS, it gets even more challenging to reject the alternatives because there is nothing else for them to do (even though not doing something is also an action).
The issue with ME/CFS, as Ravn and Hutan mention, is that there are so many «experts» that have their pet theories, and patients latch onto them (especially as a defence against unfounded psychosomatic theories). This is especially challenging in journalism where a large portion of journalist firmly believe that their to role isn’t to challenge the experts (I’d argue that they have an ethical duty to seek the truth, and to only report on subjects where they have the ability to make a reasonable assessment - i.e. most of them should stay away from science).
But, as e.g. @dave30th, @Grigor and Sander Zurhake have shown shown, it’s possible to combine journalism/filmography and science. And your responses have been encouraging, @trenteliason
If you ever wonder if something is supported by the evidence, I’m sure plenty of members here would love to contribute to the discussion.
This.
Utsikt
Senior Member (Voting Rights)
That’s great to hear!
Jonathan Edwards
Senior Member (Voting Rights)
Hi @trenteliason,
This does look like an interesting project. Your motivation sounds pretty much like mine - to find out more about an illness I had never really thought about until I started hearing people describe it in their own words.
I would echo what some others have said, or implied. There is an important distinction between lived experience in terms of what it feels like to be ill, which should not be questioned, and what it seems like to someone is happening in causal terms. We have to be wary of the alternative to Jen Brea's comment: 'someone is telling the wrong story about themself', when it comes to attributing causation, especially in situations where nobody really knows what is going on.
This does look like an interesting project. Your motivation sounds pretty much like mine - to find out more about an illness I had never really thought about until I started hearing people describe it in their own words.
I would echo what some others have said, or implied. There is an important distinction between lived experience in terms of what it feels like to be ill, which should not be questioned, and what it seems like to someone is happening in causal terms. We have to be wary of the alternative to Jen Brea's comment: 'someone is telling the wrong story about themself', when it comes to attributing causation, especially in situations where nobody really knows what is going on.
trenteliason
Established Member
Good feedback everyone.
So far most of the responses to "what helps you the most in managing your ME/CFS?" are responses that my team hasn't taken much issue with. Typically the responses are either 1. social support (my family, a doctor who I found who has ME, etc.), 2. some sort of pacing (tracking your energy, etc.), 3. medication for comorbidities like POTS. Neither of these three I see as problematic, but I might be wrong.
The other part of the interview that may draw some questionable responses is the part where they are given a chance to describe how/when "everything changed" for them. Often they will go into detail of how they were diagnosed with ME. Often they describe EBV or another similar viral event, after which they had some lingering symptoms, and then some sort of initial crash event which prompted them on the path to eventual diagnosis. I'm doing my best to vet out any information that is false or shaky at best. If any of you see a testimonial that has something questionable being promoted, please feel free to let me know and I'll look over it and consider taking it down.
I do think we walk a fine line, and I am by no means the best judge, but trying to do my best. It is so critical that these stories are shared, and that people can look over each other's experiences, both for the sake of collecting anecdotal data, and for the sake of commiseration between the sick. For the most part, the video responses have been fine. The comments on the videos, on the other hand, often expose a massive public ignorance. Usually the community steps in to correct the most heinous of commenters, but I just think these things need to be exposed. Even if a patient is saying something questionable about the nature or treatment of ME, this is someone who, without our simple prompts and platform, would have never been able to express any of what they were going through, anywhere. So part of me feels like, it is unfair for me to filter what they are saying, since anyone with slightly more health would be able to say whatever they want, on whatever platform they want, whenever they want.
That being said, I hear you guys, let me know if there's something egregious being said that you see in any of the videos. I edit them and watch them before posting, and very open to feedback and willing to take things down if necessary.
So far most of the responses to "what helps you the most in managing your ME/CFS?" are responses that my team hasn't taken much issue with. Typically the responses are either 1. social support (my family, a doctor who I found who has ME, etc.), 2. some sort of pacing (tracking your energy, etc.), 3. medication for comorbidities like POTS. Neither of these three I see as problematic, but I might be wrong.
The other part of the interview that may draw some questionable responses is the part where they are given a chance to describe how/when "everything changed" for them. Often they will go into detail of how they were diagnosed with ME. Often they describe EBV or another similar viral event, after which they had some lingering symptoms, and then some sort of initial crash event which prompted them on the path to eventual diagnosis. I'm doing my best to vet out any information that is false or shaky at best. If any of you see a testimonial that has something questionable being promoted, please feel free to let me know and I'll look over it and consider taking it down.
I do think we walk a fine line, and I am by no means the best judge, but trying to do my best. It is so critical that these stories are shared, and that people can look over each other's experiences, both for the sake of collecting anecdotal data, and for the sake of commiseration between the sick. For the most part, the video responses have been fine. The comments on the videos, on the other hand, often expose a massive public ignorance. Usually the community steps in to correct the most heinous of commenters, but I just think these things need to be exposed. Even if a patient is saying something questionable about the nature or treatment of ME, this is someone who, without our simple prompts and platform, would have never been able to express any of what they were going through, anywhere. So part of me feels like, it is unfair for me to filter what they are saying, since anyone with slightly more health would be able to say whatever they want, on whatever platform they want, whenever they want.
That being said, I hear you guys, let me know if there's something egregious being said that you see in any of the videos. I edit them and watch them before posting, and very open to feedback and willing to take things down if necessary.
Jonathan Edwards
Senior Member (Voting Rights)
Sounds good.
Utsikt
Senior Member (Voting Rights)
If the purpose of the media is to get their voices and realities out there, it could be argued that removing the things that will cause «distractions» might help you achieve your goal to a larger degree.
The nasty comments will still be there, but the ones about causation will be unprompted. And that will in itself serve as a way to document and display the abuse, prejudice and stigma.
«I can’t even talk about how horrible living like this is without being told it’s my fault».
You can be sure that once we know more about causation - the voices will be heard, and together we’ll make them listen.