What's pretty difficult for me to understand is that patients keep going back to their doctors even when they're already on a course of deterioration. Given that as soon as you have an ME/CFS diagnosis you can read on Wikipedia that PEM is the hallmark symptom and that your only chance at stabilisation and avoid deterioration is to try to avoid more flares as good as you can with pacing and energy management.
I don't want to blame these people for not stopping to go back to such doctors. But I think that ME advocacy organisations should definitely put some advice out there on how to break away from a doctor that is harming them and certainly not go back and trying to change them. This dynamic strongly reminds me of abusive relationships where the victims famously might need a dozen attempts to break away from an abuser. (Happened to me with the abuse I experienced in my family)
Often its pressure from family members you rely on.
For them to accept your illness or care for you they require medical legitimacy. And so they pressure you to see doctors more as you deteriorate. When you’re too severe to care for yourself and rely on them there’s not much you can do.
Then also there’s the fact that in many cases people who rely on disability income or similar are forced into these harmful programs to even qualify.
What's pretty difficult for me to understand is that patients keep going back to their doctors even when they're already on a course of deterioration. Given that as soon as you have an ME/CFS diagnosis you can read on Wikipedia that PEM is the hallmark symptom and that your only chance at stabilisation and avoid deterioration is to try to avoid more flares as good as you can with pacing and energy management.
I don't want to blame these people for not stopping to go back to such doctors. But I think that ME advocacy organisations should definitely put some advice out there on how to break away from a doctor that is harming them and certainly not go back and trying to change them. This dynamic strongly reminds me of abusive relationships where the victims famously might need a dozen attempts to break away from an abuser. (Happened to me with the abuse I experienced in my family)
I'll outline my situation as I think it's illustrative.
My partner and I began both to suffer from PEM after a strep infection at the start of 2017. But we had no idea what was wrong with us. We both had chronic tonsillitis after so we thought that was why we felt bad. Or we were catching colds half the time. At one point my partner thought she might have 'cfs', did a bit of research and dismissed it, possibly after talking to a dismissive GP she can't remember. But we never knew much about ME/CFS as I now understand it.
But essentially for years all we knew is we felt really sick a lot of the time and could no longer work or study full-time, and sometimes had to take entire weeks off. Doctors implied it was stress, or depression etc. 'It's antidepressants or the status quo' a doctor who'd never examined me told me on the phone once. Tragically at one point around this time my partner read online about people saying exercise made them sicker, thought 'these people must be mad' and didn't mention it to me. We kept pushing and pushing. She graudated and could no longer keep up the job she had done part time during her masters. I l was struggling to complete mine, with very little energy for it or anything else. We would both be categorised as mild at this point, her dipping into moderate sometimes.
Then we moved back home to where our families live (we met in the city we both went to uni in but our families live half an hour apart by coincidence) and I found a GP who took my tonsillitis seriously (in Scotland they had been acting like even that was psychosomatic) and was sympathetic and seemed to listen. A few months after a tonsillectomy and still experiencing symptoms, I asked him if I should be evaluated for cfs. He said he would diagnose me if I saw the surgeries mental health liason person. After I talked to this guy, my GP sold me a bill of goods about the biopsychosocial model and the mind and body being connected, undoing my certainty that what was happening to me was physical. He did not diagnose me or refer me anywhere. My partners GP did similar.
Around the same time an asthma nurse told my partner to do couch to 5k to help with her fatigue because it was 'gentle'. During the first lockdown a few months later we started the course. We both felt better at first but were crashing a lot and not making the connection.
I deterioated to moderate within a couple of months and kept getting worse. My gp finally referred me to a rheumatologist who tried to prescribe GET. It was at this point I became 'ME aware'. I refused, but he also gave me a spiel about how kids with mobility aids had overprotective parents (I was 29, and I think this was a way of manipulating me) and essentially tricked me into doing GET by stealth. He ran some tests, sent me for some scans, diagnosed me and discharged me with an insincere 'good luck'. I kept deteriorating, caught covid during an ill advised house move and ended up severe, whilst my partner ended up moderate and housebound. We have been like this for 5 years now.
If we had been given accurate information about ME (this was post pace reevaluation,
there is no excuse) it is likely we would both still be mild. But we wanted to be good people and good patients and not 'one of those people'. So our lives are ruined.
I hope this perspective is useful, I got carried away writing it
If we had been given accurate information about ME (this was post pace reevaluation,
there is no excuse) it is likely we would both still be mild. But we wanted to be good people and good patients and not 'one of those people'. So our lives are ruined.
I hope this perspective is useful, I got carried away writing it
Very much useful. It's the most common story I have seen over the years, including all over the LC community. It's probably what happens to about about 90% of us who end up ill long term, at least in general terms.
I'm thinking that probably half of us wouldn't be ill anymore if the only change were that GPs gave the correct advice early and there was a minimal support system in place. Medicine is directly responsible for at least half of the total misery here, and that's likely a huge undercount. All that psychosomatic ideology does is make everything worse for everyone and far more expensive. A giant crime, committed purely out of a toxic mix of beliefs and corrupt agendas.
Now, people believe “ME is real” but also they suspect your problem isn’t really ME. They are always suspicious that you are actually depressed or attention-seeking.
You never have the right sort of ME. If you are in bed, severe etc then it’s “too serious” to be ME or you’re just depressed. If you’re not trapped in bed and able to do things, it’s “not really” ME you would be fine if you just tried harder and didn’t sleep in the day and stay up at night, you can do things when it suits you….
Very much useful. It's the most common story I have seen over the years, including all over the LC community. It's probably what happens to about about 90% of us who end up ill long term, at least in general terms.
I'm thinking that probably half of us wouldn't be ill anymore if the only change were that GPs gave the correct advice early and there was a minimal support system in place. Medicine is directly responsible for at least half of the total misery here, and that's likely a huge undercount. All that psychosomatic ideology does is make everything worse for everyone and far more expensive. A giant crime, committed purely out of a toxic mix of beliefs and corrupt agendas.
I understand why you ask the question. So don’t take this rant personally.
People simply want to believe that there is always something to do that can help, and that healthcare professionals know what they are talking about.
If you wonder why people keep going back to doctors that harm them, you might as well ask why people don’t mask to protect themselves from covid and other infections.
And have you never been reluctant to accept that you were wrong about something? Ignored evidence against your better judgement? Ever done something irrational or something you regret?
I think there is very little use in asking why pwME/CFS didn’t chose differently sooner. The much more important question is why PVF and ME/CFS is not common knowledge considering how common it is. Start with questioning why the people and systems that have been given the power and responsibility to protect the public health have failed so completely.
I understand why you ask the question. So don’t take this rant personally.
People simply want to believe that there is always something to do that can help, and that healthcare professionals know what they are talking about.
If you wonder why people keep going back to doctors that harm them, you might as well ask why people don’t mask to protect themselves from covid and other infections.
And have you never been reluctant to accept that you were wrong about something? Ignored evidence against your better judgement? Ever done something irrational or something you regret?
I think there is very little use in asking why pwME/CFS didn’t chose differently sooner. The much more important question is why PVF and ME/CFS is not common knowledge considering how common it is. Start with questioning why the people and systems that have been given the power and responsibility to protect the public health have failed so completely.
I feel misunderstood. I explicitly mentioned that I didn't want to put the blame on these patients.
I still think it is an important question to ask what kind of information should be out there for patients that could support them to not go to doctors and other health professionals who do not take them seriously when they say they have a somatic ailment but instead promote a psychiatric understanding of their problems.
I was able to do so immediately because I had already survived and broken away – with great difficulties and much harm done though – from several decades of mispsychiatrization and quackery by my own narcissist and psychiatrist mother and her psychological and psychiatric psychotherapist colleagues.
I was like: Oh, the majority of the somatic doctors are just as crazy, stupid, and brutalized as the psychiatrists and clinical psychologists that have harmed me over several decades. I wouldn't have thought that but now that I see it I take it at face value and will certainly not doubt my perception.
My question goes into the direction of how to teach people to never ever doubt their perceptions when a doctor or another health professional seems to be off-base but instead trust themselves and research the internet for themselves and then make up their own minds.
I still think it is an important question to ask what kind of information should be out there for patients that could support them to not go to doctors and other health professionals who do not take them seriously when they say they have a somatic ailment but instead promote a psychiatric understanding of their problems.
I was able to do so immediately because I had already survived and broken away – with great difficulties and much harm done though – from several decades of mispsychiatrization and quackery by my own narcissist and psychiatrist mother and her psychological and psychiatric psychotherapist colleagues.
In short: we already have the information, but no way to spread it to the target group, and no way to gain perceived legitimacy and authority on the matter.
——
I don’t think it’s possible to achieve what you’re suggesting. As you say, your experiences have put you in a relatively unique position where you’re aware that people can be extremely wrong, that they can hurt you, and that you might need to figure things out on your own.
Most people have to learn that the hard way (like you) before they believe it.
S4ME have already produced factsheets that give any reader all the information they need to realise that pushing through is not the best for them. Others have written brilliantly about their experiences in various places. But people will never go looking for that information unless the experience that whatever they are currently doing isn’t working. And they won’t stumble upon it otherwise because of how little crossover there is between online societies.
The situation would marginally improve if the various ME/CFS and LC associations were better at their messaging, but people have been trying to fix that for decades and gotten nowhere.
The press might be able to contribute by spreading the word, but they seem to be chronically incapable of avoiding the garbage and respecting «authorities» and «experts».
So the only realistic solution is to get the government to listen to us, but as NICE NG206 has demonstrated through BACME, most providers will just ignore the new official messages and find ways to do their thing regardless.
So the only realistic solution is to get the government to listen to us, but as NICE NG206 has demonstrated through BACME, most providers will just ignore the new official messages and find ways to do their thing regardless.
The core of the problem is the overwhelming majority of the populace of the planet gaslights ME/CFS patients due to having the wrong information or worse they are doing it intentionally. This all stems from medicine, it has created the stigma. Its very hard to believe in yourself and a few patients you meet online over and above the entire healthcare system of the planet, the bulk of the researchers that have been in the field for decades and written medical guidance. You have to be exceptional to trust in your own body over all that and most people don't until its clear they are wrong and you have exercised yourself into a very precarious situation.
The advice and the treatment has got more harmful since the 2000s and NICE hasn't fixed a thing and neither has all this Long Covid research. We are still treated precisely the same and I honestly don't see that changing much in the next 20 years, there just isn't much interest from anyone to fix it even when they recognise the problem.
In short: we already have the information, but no way to spread it to the target group, and no way to gain perceived legitimacy and authority on the matter.
——
I don’t think it’s possible to achieve what you’re suggesting. As you say, your experiences have put you in a relatively unique position where you’re aware that people can be extremely wrong, that they can hurt you, and that you might need to figure things out on your own.
Most people have to learn that the hard way (like you) before they believe it.
S4ME have already produced factsheets that give any reader all the information they need to realise that pushing through is not the best for them. Others have written brilliantly about their experiences in various places. But people will never go looking for that information unless the experience that whatever they are currently doing isn’t working. And they won’t stumble upon it otherwise because of how little crossover there is between online societies.
The situation would marginally improve if the various ME/CFS and LC associations were better at their messaging, but people have been trying to fix that for decades and gotten nowhere.
The press might be able to contribute by spreading the word, but they seem to be chronically incapable of avoiding the garbage and respecting «authorities» and «experts».
So the only realistic solution is to get the government to listen to us, but as NICE NG206 has demonstrated through BACME, most providers will just ignore the new official messages and find ways to do their thing regardless.
In short: we already have the information, but no way to spread it to the target group, and no way to gain perceived legitimacy and authority on the matter.
——
I don’t think it’s possible to achieve what you’re suggesting. As you say, your experiences have put you in a relatively unique position where you’re aware that people can be extremely wrong, that they can hurt you, and that you might need to figure things out on your own.
Most people have to learn that the hard way (like you) before they believe it.
S4ME have already produced factsheets that give any reader all the information they need to realise that pushing through is not the best for them. Others have written brilliantly about their experiences in various places. But people will never go looking for that information unless the experience that whatever they are currently doing isn’t working. And they won’t stumble upon it otherwise because of how little crossover there is between online societies.
The situation would marginally improve if the various ME/CFS and LC associations were better at their messaging, but people have been trying to fix that for decades and gotten nowhere.
The press might be able to contribute by spreading the word, but they seem to be chronically incapable of avoiding the garbage and respecting «authorities» and «experts».
So the only realistic solution is to get the government to listen to us, but as NICE NG206 has demonstrated through BACME, most providers will just ignore the new official messages and find ways to do their thing regardless.
I would like to remind you that I am new on this platform.
It is a bit discouraging for me when I raise a question and the only answer I get is that you have it all figured out already and nothing could be done.
I will let my question sink in over the next days. Because I think I've got something here.
I think it is worthwhile to try to understand why educated middle class patients end up being harmed by quacks when in the meantime there is so much information on ME/CFS out there.
I had to learn from my own experience because there was literally no information out there that psychotherapy was highly ineffective for people with serious psychiatric ailments and could even be very harmful. But as soon as I could access such information provided by the psychiatry journalists of Mad in America I left psychotherapy.
For ME patients it's different. The whole controversy is out there but patients go on to buy into the psychiatric BS about ME.
I would like to remind you that I am new on this platform.
It is a bit discouraging for me when I raise a question and the only answer I get is that you have it all figured out already and nothing could be done.
I will let my question sink in over the next days. Because I think I've got something here.
I think it is worthwhile to try to understand why educated middle class patients end up being harmed by quacks when in the meantime there is so much information on ME/CFS out there.
I had to learn from my own experience because there was literally no information out there that psychotherapy was highly ineffective for people with serious psychiatric ailments and could even be very harmful. But as soon as I could access such information provided by the psychiatry journalists of Mad in America I left psychotherapy.
For ME patients it's different. The whole controversy is out there but patients go on to buy into the psychiatric BS about ME.
But also the information is relatively new. Many people have had ME for a long time. I had GET and CBT before I had a Facebook profile.
NICE guidance release in 2022 - only three years ago.
Educated middle class people have no reason to doubt their doctor! I have had this conversation with so many friends in recent years - why aren’t you getting any help, why don’t you have a clinic, why aren’t you using services etc?
They haven’t been chronically ill (or worse, they have had cancer which was treated, and they had a brilliant experience of good healthcare) they cannot comprehend that the NHS not only does very little for us, but also that it will still give bad advice.
People tell me “there is help, there are clinics, look at Long Covid the government is spending so much, everyone knows ME is real” they may “know” it’s real, but it’s not at the forefront of anyone’s medical advice. Last month my bloods showed high cholesterol and the GP asked me to increase exercise, how much do I do etc. Quite honestly virtually nobody in the NHS is bothered or cares (apologies to those who do care).
If the NHS and the Dr aren’t doing anything, are you really ill? Is it really ME/CFS? People put a lot of faith in medics, much more than they put in you, a sick person who isn’t functioning.
Society expects you to work. Society expects you to exercise, eat well, try hard, be motivated. ME/CFS not only subverts that, but the best treatment for ME/CFS also subverts that. There are lots of social and medical norms which don’t fit with having ME. The cultural context cant be ignored.
Not everything comes accompanied by big red flags. The nice, understanding physio who says they believe your symptoms are real and can talk all about the terrible treatment of ME patients starts to push you to do more, asks you to attend appointments in person not online for no good reason, starts criticising what you’re eating…meanwhile these appointments are starting to cause you to crash.
I would like to remind you that I am new on this platform.
It is a bit discouraging for me when I raise a question and the only answer I get is that you have it all figured out already and nothing could be done.
I agree that the answer is discouraging, and it’s not my intention to discourage asking good questions like you do, so I apologise if that’s the effect my answers or their delivery have.
I think it is worthwhile to try to understand why educated middle class patients end up being harmed by quacks when in the meantime there is so much information on ME/CFS out there.
This is me and most of the people here. And pretty much everyone had to learn it the hard way.
The problem is that we would have to convince people that the entire system is broken so they have to go outside it, before they had the chance to experience the brokenness themselves. Since most people have some kind of trust in the system(s), that’s an incredibly difficult task.
When you add the limited capacity that pwME/CFS have, it’s very difficult to organise any kind of large scale rally for attention. We can’t disrupt society with protest because we’re too sick, and we don’t have the capacity to combat all the misinformation from the BPS proponents.
That’s not even considering all of the misinformation that’s being spread by the associations and certain ME/CFS influencers, that continue to harm our credibility as a patient group.
I know I just keep going on about the challenges we face, but you’re asking about maybe the most difficult problem.
In 2015, the then prime minister of Norway said this to the largest news broadcaster. Nothing changed, and some things got worse.
Prime Minister Erna Solberg, who opened the exhibition, believes it is important that the health system now prioritizes research on ME and believes that patients have been treated too poorly by the Norwegian health system over the years.
– It's really a scandal. Patients have faced a lack of respect simply because we have lacked knowledge. The worst thing is that we haven't worked that hard to gain that knowledge, says Solberg, who has allocated money for a new diagnostic center for muscle and fatigue conditions.
That’s not to say that we shouldn’t continue to try. I think that one of the larger impacts we can have, is to continue to discuss the science here, to ensure that the future science has the best chance that it’s got to be as good as possible. Because the one thing that will be a complete game changer, is an effective treatment or a reliable biomarker.
I think it is worthwhile to try to understand why educated middle class patients end up being harmed by quacks when in the meantime there is so much information on ME/CFS out there.
One reason might be they're not getting a diagnosis. When I wasn't recovering from Covid and showing signs of (what I now know to be) ME/CFS, my Dr didn't give me a label. So I hadn't the slightest idea where to look for information*. She was perplexed and told me to increase exercise. Also I was in the fortunate position of having worked with Drs before and had relatives who had experienced medical misadventure, so I didn't have them on a pedestal as a profession.
I was struggling just feeding myself and doing daily activities, while barely managing to get through my job and holding on by my fingernails & her advice was to increase activities?! It was so obviously ludicrous advice combined with her psychologising / dismissing me, that I didn't take her seriously for 1 minute (while of course pretending to take her seriously because of the risks of not being a 'model' patient).
She should have advised me I was way too unwell to be trying to work and needed time off work. The option of just stopping work hadn't crossed my mind for obvious reasons and I was going to a Dr trying to get to the bottom of it so I could work and continue with my life... instead shocked to find all this gaslighting right at my most vulnerable moment. Her dismissal made me feel briefly suicidal. I was so incredibly ill and the one medical person you are supposed to go to for support was fobbing me off.
Luckily I unexpectedly happened to see another Dr who immediately said I was too unwell to be in work & signed me off. The illness got worse over time, I believe it was unfolding, new neurological symptoms began, there were episodes where I believe I came close to death. Would that have happened if I'd stopped work sooner, known about pacing?? I don't know but I suspect not. My sense is that an unfolding disease process was at play. But I am certain if I'd followed the Drs advice re exercise, I might not be around now, or very severely ill. I've no doubt about that.
*Will forever be extremely grateful for all the pwME back in 2020 who started sharing their experiences online with LC patients & advised re pacing / resting etc. as well as explaining the medical context.
Sorry for taking up some much real estate on here writing in this thread. But it also occurs to me... when I was so ill in year 1, struggling still to juggle all the balls, I literally did not have the capacity to go researching online re what was going on, not even briefly. I was firefighting trying to keep going. Was only later a few months off work that I was able to search out more information and came across all the helpful stuff.
I agree that the answer is discouraging, and it’s not my intention to discourage asking good questions like you do, so I apologise if that’s the effect my answers or their delivery have.
This is me and most of the people here. And pretty much everyone had to learn it the hard way.
The problem is that we would have to convince people that the entire system is broken so they have to go outside it, before they had the chance to experience the brokenness themselves. Since most people have some kind of trust in the system(s), that’s an incredibly difficult task.
When you add the limited capacity that pwME/CFS have, it’s very difficult to organise any kind of large scale rally for attention. We can’t disrupt society with protest because we’re too sick, and we don’t have the capacity to combat all the misinformation from the BPS proponents.
That’s not even considering all of the misinformation that’s being spread by the associations and certain ME/CFS influencers, that continue to harm our credibility as a patient group.
I know I just keep going on about the challenges we face, but you’re asking about maybe the most difficult problem.
In 2015, the then prime minister of Norway said this to the largest news broadcaster. Nothing changed, and some things got worse.
Prime Minister Erna Solberg, who opened the exhibition, believes it is important that the health system now prioritizes research on ME and believes that patients have been treated too poorly by the Norwegian health system over the years.
– It's really a scandal. Patients have faced a lack of respect simply because we have lacked knowledge. The worst thing is that we haven't worked that hard to gain that knowledge, says Solberg, who has allocated money for a new diagnostic center for muscle and fatigue conditions.
That’s not to say that we shouldn’t continue to try. I think that one of the larger impacts we can have, is to continue to discuss the science here, to ensure that the future science has the best chance that it’s got to be as good as possible. Because the one thing that will be a complete game changer, is an effective treatment or a reliable biomarker.
Agree, and people don’t like being wrong and certainly are not what they think themselves to be when it comes to realising their actions led to certain consequences ….. and facing what their choices did to that person in front of them
I say that because I’ve watched that test over decades with people and the % is single digits eventually
Compared to most who’d prefer to still find a way to minimise the person the taunted or put work into because they believed we weren’t ill and led to ten times more disability than necessary now as well as callous hell whilst they played their part in doing it
I also noticed the pattern that whilst it doesn’t advantage that person they love having bs to pretend they believe then eventually actually believe to throw in the other persons face. And the mother fed up with being tired seems to be a common one in on the boot end of because of the tropes they love of the illness.
People around us believe it because they aren’t nice people. That’s why. And we’ve a world most play zero sum in so enjoy someone else being kicked down again.
I’ve had 30yrs of it and the uk is worse than ever. There was a window of hope a few years ago and I’m only still here because I found one doctor who hasn’t been believing they need to send me off for walks after many decades. I don’t feel safe though as they operate surrounding by those ‘but Dr x is lovely type doctors who also believe we just need walks’.
If you really have the aim of wanting to change it then you’ll be happy to hear the problem being described so you know how to be sensitive and what it is you are tackling
And too many of us are so ill maybe with comorbidities too that we get dragged in front of people because we can’t move our arms or won’t get out of bed once severe and very severe - and once under these people we don’t have choices to leave hospitals if you look up some of the cases in the uk
Some of the ways people have been treated is truely appalling. I sort of wonder if I have had a lucky run with doctors or because I look like I am infective when at my worst and that I was always believed. Hopefully it is not because I am male. The biopsychosocial doctors that speak publicly in Australia usually don’t come off as particularly cogent as well.
I'm thinking that probably half of us wouldn't be ill anymore if the only change were that GPs gave the correct advice early and there was a minimal support system in place.
It is a mixed bag. But I wouldn't say it is worse, far as I can tell.
Should say that I am now quite removed from the day-to-day coalface battles here, as 1) I am a very long term patient and disability pensioner, and 2) am also nearing the age where I qualify for the old age pension. In other words, the government know full well there is nothing left to squeeze from me. Even the most ardent rehab advocate would probably accept that.
If I was a new patient and young, I have no doubt it would be a very different and harsher situation.
when I was so ill in year 1, struggling still to juggle all the balls, I literally did not have the capacity to go researching online re what was going on, not even briefly.
Imagine what it was like for those who got sick pre-internet.
I was diagnosed before the BPS school became dominant, and we had nothing more than basic medical texts and some mildly useful stuff from patient groups (not criticising them, that was all that was available to anybody back then).
Perversely, in some ways that may have actually been a modest positive, as we had to largely figure it out for ourselves, without the BPS club breathing down our neck.
Have often thought about that. I just can't imagine how much worse this whole thing would have been without the internet & without being able to access support & insight from other patients.
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