Sudden realisation(trigger warning)

[Hutan]

I actually think that, by and large, the whole psychosomatics debate is not that relevant to ME. The UK is an exception, with powerful lobbying psychiatrists, but in most other countries it's mostly just a bunch of people with a confused look on their faces at best, and completely unaware of the problem at worst. You see sometimes talk of psychosomatics but it's mostly because they don't know what else to say, rather than truly having conviction in it.
And also, psychosomatics is a concept from medical culture, in the pharma world nobody cares about such a thing, they are pragmatic businessmen that only care about treating something tangible. Most of the innovation biotech wise comes from that world, not from your GP or neurologist blabbering about psychosomatics.

I wonder, then, if the key out of this stalemate, would have been to involve a group of high level scientists, engineers and physicists to try and find something measurable about the illness, symptoms wise, to be able to put us in a firm category. I don't think my symptoms are subjective, they just haven't been measured yet.

I disagree that the psychosomatics debate isn't that relevant to ME/CFS, or that the UK is an exception. In my country, I would bet on most doctors thinking that health anxiety/hypochondria/conversion disorder is a substantial part of ME/CFS. It's the same across the world, I know it's the same in parts of South East Asia.

And, that lack of belief that there's anything of substance is what has led to the lack of careful description of symptoms and the lack of the sort of quality preliminary research that would provide the foundation for big Pharma to become interested. That lack of belief has meant that what patients say is dismissed. For example, intermittent muscle weakness could be a clue as to what is going on, but instead all sorts of symptoms are wrapped up in the general term of 'fatigue'.

 

[Hubris]

In my country, I would bet on most doctors thinking that health anxiety/hypochondria/conversion disorder is a substantial part of ME/CFS.

For those that even know ME/CFS exists, sure, but did they get to that belief through conviction or simply because if you can't figure something out in medicine it's standard to say psychosomatic? I have seen so many doctors that in the end mentioned a possibility of a psychosomatic disorder but only after they really just had no idea what to do and felt pressed to say something. In this context, even if you replace "it's psychosomatic" with "I have no clue what it is", the end result is the same. I have seen many doctors who have a lot of prejudice against mental illness as well, but that hasn't stopped working drugs from being developed and approved for those conditions.

Another example would be doctors that think how much you "fight" affects your survival rates in cancer. If a patient dies and the doctor thinks they didn't "fight" hard enough with their mind (sounds kinda silly when you say it that way eh?), it is insulting but if there were no effective drugs for that particular cancer at the end of the day it doesn't really matter what the doctor thinks if they have already tried everything.

What I'm saying is even if there were a country with zero belief in psychosomatics, I'm skeptical that the situation there would be much different for ME patients. They would be respected more but at this point, I don't know about you guys my illness is so severe that I couldn't care less about respect, I want a treatment. I have gotten respect from many doctors but it hasn't helped me one bit.

I think that in most scenarios if you took out the psychosomatics with an eraser you'd still end up with a disintered or confused doctor. I've seen many doctors that wanted to help me but their thinking was way off the mark of what is required. But there were no talks of ME or psychosomatics in those appointments or email exchanges, they were just trying to figure things out but totally unable to capture what was going on.

Maybe the preliminary research could be handled by someone else, since medical professionals don't seem to be up to the task.

 

[Hubris]

Another way to say it would be this:
There is a lack of attention to detail in medicine. Is it because of psychosomatics, or are the psychosomatics a consequence of this embedded and widespread lack of attention to detail?

 

[Solstice]

For those that even know ME/CFS exists, sure, but did they get to that belief through conviction or simply because if you can't figure something out in medicine it's standard to say psychosomatic? I have seen so many doctors that in the end mentioned a possibility of a psychosomatic disorder but only after they really just had no idea what to do and felt pressed to say something. In this context, even if you replace "it's psychosomatic" with "I have no clue what it is", the end result is the same. I have seen many doctors who have a lot of prejudice against mental illness as well, but that hasn't stopped working drugs from being developed and approved for those conditions.

Another example would be doctors that think how much you "fight" affects your survival rates in cancer. If a patient dies and the doctor thinks they didn't "fight" hard enough with their mind (sounds kinda silly when you say it that way eh?), it is insulting but if there were no effective drugs for that particular cancer at the end of the day it doesn't really matter what the doctor thinks if they have already tried everything.

What I'm saying is even if there were a country with zero belief in psychosomatics, I'm skeptical that the situation there would be much different for ME patients. They would be respected more but at this point, I don't know about you guys my illness is so severe that I couldn't care less about respect, I want a treatment. I have gotten respect from many doctors but it hasn't helped me one bit.

I think that in most scenarios if you took out the psychosomatics with an eraser you'd still end up with a disintered or confused doctor. I've seen many doctors that wanted to help me but their thinking was way off the mark of what is required. But there were no talks of ME or psychosomatics in those appointments or email exchanges, they were just trying to figure things out but totally unable to capture what was going on.

Maybe the preliminary research could be handled by someone else, since medical professionals don't seem to be up to the task.

I'm Dutch. ZonMw(Dutch NICE) allocated 28.5 million in funds. A lot of good can be done with that money. The BPS-group is currently preventing that. Without a BPS-group that money would all be going to proper biomedical science. They are actively working against us and so we have to fight them with letter campaigns, social media posts etc. to get what's ours. @Hutan is from Oceania I think where 50 million(?) was allocated for either ME/CFS or LC. That money is in the process of being appropriated by the BPS-group over there.

So we've got this fight on many fronts, we need money and we need it properly allocated. Vested interests are actively working against that so we have to fight them on that. It's not blase disinterest, it's actively working against us to further their own careers. It's been like that in the Benelux for at least 20 years, probably a lot longer.

I also don't think that no one outside that group is taking an interest, it's just that funding gets gobbled up by nitwits or people with a different agenda. So we're stuck having to fund our own research. The best ZonMw(Dutch version of NICE) could have done was start our own version of DecodeME or just hand the money over to the groups lead by Hanson, Lipkin or one of the others that are already producing papers.

Instead we have to have our own Dutch thing that is currently being distorted by a very active small group of researchers dedicated to milking us dry without actually helping us.

 

[Hubris]

I'm Dutch. ZonMw(Dutch NICE) allocated 28.5 million in funds. A lot of good can be done with that money. The BPS-group is currently preventing that. Without a BPS-group that money would all be going to proper biomedical science. They are actively working against us and so we have to fight them with letter campaigns, social media posts etc. to get what's ours. @Hutan is from Oceania I think where 50 million(?) was allocated for either ME/CFS or LC. That money is in the process of being appropriated by the BPS-group over there.

So we've got this fight on many fronts, we need money and we need it properly allocated. Vested interests are actively working against that so we have to fight them on that. It's not blase disinterest, it's actively working against us to further their own careers. It's been like that in the Benelux for at least 20 years, probably a lot longer.

I also don't think that no one outside that group is taking an interest, it's just that funding gets gobbled up by nitwits or people with a different agenda. So we're stuck having to fund our own research. The best ZonMw(Dutch version of NICE) could have done was start our own version of DecodeME or just hand the money over to the groups lead by Hanson, Lipkin or one of the others that are already producing papers.

Instead we have to have our own Dutch thing that is currently being distorted by a very active small group of researchers dedicated to milking us dry without actually helping us.

Interesting, where I live (Italy) seems to be an outlier then. We have zero funds for ME research here. There are, very occasionally, studies made with leftovers funds by some researchers but nothing worth mentioning. If millions were allocated to ME research here, I don't think anybody would be particularly opposed to them being used for biomedical research.
Of course the average neurologist would scoff at it but having psychiatrist groups lobbying against it would seem so crazy to me. Yet in many other parts of the world it seems to be the norm.

There is zero funding and zero interest. I wonder if other countries have a silent majority like this, hidden under the vocal psychiatrists.

 

[Ash]

Interesting, where I live (Italy) seems to be an outlier then. We have zero funds for ME research here. There are, very occasionally, studies made with leftovers funds by some researchers but nothing worth mentioning. If millions were allocated to ME research here, I don't think anybody would be particularly opposed to them being used for biomedical research.
Of course the average neurologist would scoff at it but having psychiatrist groups lobbying against it would seem to crazy to me. Yet in many other parts of the world it seems to be the norm.

There is zero funding and zero interest. I wonder if other countries have a silent majority like this, hidden under the vocal psychiatrists.

That is really interesting that in your experience and observation in Italy there is a different perspective or type of approach to patients and people with our illness or similar symptoms.

In my understanding humans are quick to anger when they fear something either physical or psychological. So that we can fight off threats and save ourselves. So there is a universal tendency there.

Some cultures use collective and individual wisdom to temper this tendency. They are skilled in protecting themselves and their communities. Through managing of threats through cooperation, study learning and listening to nature and those with more experience and compassion or individual specialist skills and experience. These cultures teach and pass down their knowledge through example they don’t teach violence through harsh treatment of children and fight for survival, rather than domination and exploitation of people and land.

The industrial revolution’s occurred in Endland a place where the leaders had consolidated power through violence and maintained power with violence and a hierarchical system of domination. The land enclosures drove the people from their land. Servitude to the lords and master or face starvation. No free access to shelter water food on the once common land, now claimed as masters land. His terms or torture and death.

So this would be one culture where oppression was the path chosen for almost everyone. Overcrowding poor housing malnutrition. Infectious disease thrived in this environment. England wasn’t the only country to pick extreme oppression at home then spread this violence outward. A long with using infectious disease as a biological weapon. That was a colonial country pursuit and the head started of the Industrial Revolution enabled by various factors including servitude of the people.

Over generations a large enough portion the population had been successfully indoctrinated/threatened with a domination or die mentality/reality and were quite enthusiastic about inflicting genocidal violence on others across the globe.

So it was that people who were not at the top of society were expected to be fit enough to work for their masters purposes, until damaged sickened then left to die. This particular social decision about how to treat the sick was not inevitable and was implemented through extreme and ongoing violence. But eventually it became accepted to a large enough extent that it appeared “natural” in some distorted way. This violence is not merely imbedded. The system of modern medicine is made by it. It’s inseparable. Now worldwide as lest as far as colonialism spread. There are and all ways have been pockets of resistance from within the European centre of this. But most resistance is from peoples of other lands who have retained their traditions in opposition.

People with ME are so often unable to work or work to the extent demanded by society that marks us out as a target, we are made example of.

The psychosomatic framework is the current iteration of a violent and victim blaming culture. It is a tool of oppression that needs to be dismantled, it’s not the root cause of the problem.

I am not familiar enough with how these symptoms of oppression work as products of empire in Japan or China. But as I recall there are both similarities and differences.

In this case, around the subject of ME it’s the northern European manifestation of the infliction of poverty and death, sink of swim survival of the fittest ground zero England, Germany, Austria, Hungary?, Belgium, Holland. Suffered by millions around the world.
The toolbox of choice is a psychosomatic framework.

Since we are in a pandemic- with the probability of more on the way- where the psychosomatic framework is being used in order to deny workers adequate PPE, to deny patients infection control safety measures in hospitals, to deny disabled people the means for survival both material and medical, to deny workers compensation for disability and death (families), and to deny millions across the the world treatment for ongoing damage from infection with COVID, the framework has to go. Of course another will be implemented should we achieve success. Because the goal is deprivation and resource hoarding by the powerful.

So I agree, even for BPS researchers and the medical professionals who use the terminology they don’t all necessarily believe in the psychosomatic concept, but as long as it is in place it will be ruthlessly exploited and enforced.

 

[V.R.T.]

Do you all really believe there is no hope of a treatment? That Scheibenbogen and other European researcher's will turn up nothing in their trials?

What makes you all so sure that current trials for LC will not work for mecfs if they find a successful treatment.

I can't face a lifetime of knowing I did this to myself. I was mild and I destroyed myself. If there's truly no hope I need to know so I can make appropriate plans

 

[Ash]

Do you all really believe there is no hope of a treatment? That Scheibenbogen and other European researcher's will turn up nothing in their trials?

What makes you all so sure that current trials for LC will not work for mecfs if they find a successful treatment.

I can't face a lifetime of knowing I did this to myself. I was mild and I destroyed myself. If there's truly no hope I need to know so I can make appropriate plans

Was this reply meant for me?

If so not at all! There is always hope. I Don’t say any of this out of despair. Only ambition.

I think scientists in or from Europe and every other continent in the world, will make relevant discoveries to the pathologies and treatments of our diseases. I hope that it will help us, sooner or later. Obviously sooner is preferred!!!

I just think people who want to help change the overall situation, of difficulties accessing the necessary resources for people with ME and other conditions have to have some understanding of how large, and longstanding, the obstacle of people’s perceptions of the sick and disabled is. Unfortunately influenced by the most historically invasive countries. This is the ideology that says, maybe we are worthy, maybe we are not, and that it is up to the perceptions of the most powerful which way the wind blows for us. Usually it’s an icy gale. We can’t afford good medical treatment or anything else. Or else harmful treatments are tested on us.

So I think most people within themselves care about others and want to help, they possess compassion. I think that includes many or even most in the medical profession and in scientific communities.

But somehow, century after century, disabled people are made to suffer and died at disproportionately high rates. Impoverished people are more likely to suffer from this. Negativity racialised people are more likely to be killed by this. Either via impoverishment and into disability, or via disability and into imprisonment. To become disabled and or poor via the hostile environment.

We don’t have to suffer this fate, it’s not inevitable.

If we people with ME were treated with respect and care based upon our humanity, no matter what factors caused our illness/es, or what exactly it is, not how worthy we were seen in terms of the economic value of our labour, we wouldn’t have to beg and plead our “deserving poor” ness in opposition to a purely ideological construct the “undeserving poor”.

Without the trashing of our reputation over decades as “undeserving” of social care, we’d have have no doubt already benefited from an improvement in quality of life and, in all likelihood meaningful pharmaceutical treatments invented or repurposed.

I certainly don’t think you can be said to of injured yourself into sickness, not for as long as the culture forces us all back into activity, sometimes for material survival or sometimes because we are a pro-social species and we can literally die from isolation and loneliness.

Also, it really is natural instinct, to wanna to be an active participant in the outside world and the environment the weather the nature the land, the water, the life, why would anyone not try to get that back?

It’s not your individual responsibility to know everything and never make a mistake. It was your society and the professions and decision makers job to give you good information and care.

I believe we could all benefit if people’s lives were truly valued. At the moment I don’t think ours are, and this is not because there is anything inherently unworthy about us, it’s because the culture has not freed itself of a eugenicist framework.

I don’t think we can tinker our way to good treatment. I do think we can get a break though by dismantling the system, in this particular area, starting with the current psychosomatic incarceration.

To me the above is more optimistic reassuring way of looking at the situation than to imagine either maybe we aren’t worth care or else that other people are naturally hateful towards each other and us in particular.

Edit: for clarity but I’m very fatigued so may not have been successful. Also typos

 

[Hutan]

Do you all really believe there is no hope of a treatment? That Scheibenbogen and other European researcher's will turn up nothing in their trials?

What makes you all so sure that current trials for LC will not work for mecfs if they find a successful treatment.

I can't face a lifetime of knowing I did this to myself. I was mild and I destroyed myself. If there's truly no hope I need to know so I can make appropriate plans

I'm very hopeful that ME/CFS will be better understood and that understanding will result in treatments. And I do think that the work on Long Covid and the economic imperative of getting so many working age people productive again will contribute to that. There are so many people now demanding action. There are great new tools; there must be answers in the studies on proteomics and other building blocks of cell function.

V.R.T. - There was not, and still is not, enough information for people to know without doubt how to live when they have mild ME/CFS. For some people who are on a recovery trajectory, particularly in those early first years, they may be able to be increasingly active without doing any permanent damage. We saw this in my family where one child was able to recover over two years, despite pushing herself physically, and another child was not.

And, as @Ash said so well, for most people, there will be important reasons to keep trying to push activity levels right up to the threshold of PEM - care of family, survival, a need to connect with others. Even if there was knowledge on exactly how to maximise recovery and minimise deterioration, we cannot be expected to be our own doctors, and instantly be experts in ME/CFS management.

 

[Solstice]

Do you all really believe there is no hope of a treatment? That Scheibenbogen and other European researcher's will turn up nothing in their trials?

What makes you all so sure that current trials for LC will not work for mecfs if they find a successful treatment.

I can't face a lifetime of knowing I did this to myself. I was mild and I destroyed myself. If there's truly no hope I need to know so I can make appropriate plans

I was mild and destroyed myself too, and I have come to terms with that. I followed the wrong treatment plan(CBT/GET) and even if I hadn't, patients with ME/CFS can deteriorate. If you were like me, you went in with the best intentions and got your arse handed to you. I don't think accountability for being sick and getting more sick lies with the patient tbh.

But to answer your question. I'm actually quite optimistic. The landscape with regards to research has changed tremendously, there's a lot more that's been done. Why I say that as of now I have no future is more a coming to terms that studying doesn't help me right now. Activism does, euro's I spend on books, websites etc. can be put to better use when donated to research as well. I need to present the right lingo to the people I have contact with.

In that context I've mentioned Ed Yong's article several times on this forum as it has helped me make myself better understood. I think there's a lot of reason to be hopeful, but I'd rather get proper treatment today instead of tomorrow. To expedite research, money and advocacy is needed and I'll try to focus on that more.

 

[Ash]

As @Hutan says you don’t know what the effect will be until you try, and by the time the extent of a negative reaction or outcome is determined it’s too late to reverse it. None of us knew that the negative effects warned about with ME would specifically come for us until they arrived with overwhelming force.

I am confident we will get more specific information about how and why this happens in the near future. But it can’t come soon enough,

@Solstice is correct, sometimes people with ME just get worse because of the nature of illnesses and living.

As the DeCode ME team have discovered progressive worsening of the disease is at present the most likely outcome.

Sometimes is not something we do but just something that happens due to circumstances beyond our control.

Sometimes I think there is a danger when we warn about the dangers of exertion, as we must, that we inadvertently over state the effectiveness of non-exertion in maintaining or recovering health.

 

[bobbler]

Aside from decodeME, which I think is a really promising study, there is no rational reason to think otherwise.

When 99.9% of the scientific community is completely unaware of ME or thinks of it as a non issue, you can't really expect any progress to happen. We have seen that with long COVID, turning on the money shower achieves little to nothing because nobody is motivated to figure this out or at least find something that helps the patients. Many illnesses found a treatment through trial and error even without knowing the cause. I think there's a high chance that if doctors started trialing all sorts of immune drugs in ME we would have one that works by now, even if we wouldn't be very confident as to why.

The NIH spent almost a billion on long COVID and they are just... waiting to see what happens. While paying themselves fat checks in the meantime.

The fundamental problem is that when people look at ME, they don't see anything to treat. They don't even understand what they are supposed to be looking at, they kinda just sit there with a puzzled face. And this is absolutely not the case with mental illnesses, by the way. The problem there is usually apparent even if often untreatable due to the complexity of the brain.

I actually think that, by and large, the whole psychosomatics debate is not that relevant to ME. The UK is an exception, with powerful lobbying psychiatrists, but in most other countries it's mostly just a bunch of people with a confused look on their faces at best, and completely unaware of the problem at worst. You see sometimes talk of psychosomatics but it's mostly because they don't know what else to say, rather than truly having conviction in it.
And also, psychosomatics is a concept from medical culture, in the pharma world nobody cares about such a thing, they are pragmatic businessmen that only care about treating something tangible. Most of the innovation biotech wise comes from that world, not from your GP or neurologist blabbering about psychosomatics.

I wonder, then, if the key out of this stalemate, would have been to involve a group of high level scientists, engineers and physicists to try and find something measurable about the illness, symptoms wise, to be able to put us in a firm category. I don't think my symptoms are subjective, they just haven't been measured yet.

It would be interesing to know if that was the case with other countries and psychosomatics, particularly in the ME-specific but in the 'general' of not looking further than psychosomatic just watch for example Chicago Med (US) tha seems to have a large amount of 'conversion disorder' stuff through its storylines of each episode and it feels like the episodes are generally women coming in and ending up being given a placebo or the kindly male psych helping them think their way out of their issue vs the males mostly being gunshot wounds or fires. I don't know whether it is art affecting what then happens or whether it is reflecting what happens culturally within the hospitals/profession or both

 

[Ash]

It would be interesing to know if that was the case with other countries and psychosomatics, particularly in the ME-specific but in the 'general' of not looking further than psychosomatic just watch for example Chicago Med (US) tha seems to have a large amount of 'conversion disorder' stuff through its storylines of each episode and it feels like the episodes are generally women coming in and ending up being given a placebo or the kindly male psych helping them think their way out of their issue vs the males mostly being gunshot wounds or fires. I don't know whether it is art affecting what then happens or whether it is reflecting what happens culturally within the hospitals/profession or both

I am guessing it’s everywhere to some extent. But it’s the uptight protestant Northern European countries that are the worst for this particular way that research from there/here has a stranglehold.

I reckon possibly- I don’t actually know- in a Catholic country it would be more about accepting your lowly status and learning to live with being a poor crippled creature. Your only hope being a miracle from god. After lots of praying.
But protestant propaganda demands work ethic above all even faith and fits perfectly with business and capitalism.

I say this as a Catholic in a Protestant country. All that said I don’t actually want to live under the influence of the pope so I am only attributing one particular form of injustice here and I’d take that over all the AIDS deaths, we shouldn’t have to have either should we?

I actually think that all the terrible attitudes and outcomes are really the same thing but like different flavours of ice cream.

What I know from my own experience is that religious people are more likely to support the sick members of their community. But also that when people use faith to judge you for being sick it’s much more distressing than when it’s secular criticism.

I have a limited experience of buddhism but apart from the teachers pretty much everyone at sangha was from UK, Ireland and other European countries so I imagine some kind of Christianity in psyche.

I don’t know many Muslims so I wonder how ME might be viewed from a spiritual perspective for Muslims with ME, or similar. And I wonder the same for Jewish sufferers.

From what I have read about people with chronic illness in the these communities it can go either way.

I don’t think disabled people are experiencing liberation in any meaningful way anywhere. But I have noticed the enthusiasm with which some countries band together in awfulness and I can’t see past this too see what lies beyond. I know I was very disappointed to find out how bad Germany was because in my mind technology was so advanced there.

Edit: I have heard personal testimony that it’s not great for Hindus either.

 

[JellyBabyKid]

Do you all really believe there is no hope of a treatment? That Scheibenbogen and other European researcher's will turn up nothing in their trials?

What makes you all so sure that current trials for LC will not work for mecfs if they find a successful treatment.

I can't face a lifetime of knowing I did this to myself. I was mild and I destroyed myself. If there's truly no hope I need to know so I can make appropriate plans

For me it is a case of hope for the best but plan for the worst.

I have been sick for 15 years. This year marks the 10th anniversary of my ME/CFS diagnosis, and I have had Long Covid for two years - among other things.

I have spent 7 years trying to make even the slightest dent in the benefits process, via endless emails and meetings with my MP, responding to the benefits Green Paper, sitting in zoom meetings with benefits assessor companies etc..etc. and it has got worse. Much worse.

I have spent 4 years with our local group regularly meeting with our MP. You can see me interviewing him very badly on YouTube for MEAction when I volunteered with them.

I have spent two years working to bring together ME/CFS support groups.

All of this concurrently, and I could go on, as I have done, joined or started up groups for every kind of activism I could think of or was capable of - I spit in a tube for DecodeME.

But here we are, with NHS England still blocking NICE implementation, we have had parliamentary debates 3 times in 30 years repeating the exact same words. The CMO report, the MRC highlight notice, the Gibson report, the APPG report, the PSP report and now here we are repeating the same actions hoping for a different outcome.

I got my GP to read the Nature review: https://www.nature.com/articles/s41579-022-00846-2 and despite being motivated to help, they have no actions they can take.

Why? because nothing has been approved by NICE, because of lack of research funding to do the studies to get the meds approved.

I am now very unwell and very frustrated and it feels like we are going in circles, and hitting one block after another. It just grinds me down. The speed of change is such that evidence suggests treatments are going to be years. Decades. Without funding for research and accountability for past failures, I cannot see the status quo changing for the immediately foreseeable future.

That's why I have stopped thinking the cavalry are coming. So I have to accept where I am and make the most of it. I need to focus my very limited energies on having some joy in my life now, having some meaning now as there probably won't be much of my lifetime left to enjoy when that change finally comes.

 

[Ash]

For me it is a case of hope for the best but plan for the worst.

I have been sick for 15 years. This year marks the 10th anniversary of my ME/CFS diagnosis, and I have had Long Covid for two years - among other things.

I have spent 7 years trying to make even the slightest dent in the benefits process, via endless emails and meetings with my MP, responding to the benefits Green Paper, sitting in zoom meetings with benefits assessor companies etc..etc. and it has got worse. Much worse.

I have spent 4 years with our local group regularly meeting with our MP. You can see me interviewing him very badly on YouTube for MEAction when I volunteered with them.

I have spent two years working to bring together ME/CFS support groups.

All of this concurrently, and I could go on, as I have done, joined or started up groups for every kind of activism I could think of or was capable of - I spit in a tube for DecodeME.

But here we are, with NHS England still blocking NICE implementation, we have had parliamentary debates 3 times in 30 years repeating the exact same words. The CMO report, the MRC highlight notice, the Gibson report, the APPG report, the PSP report and now here we are repeating the same actions hoping for a different outcome.

I got my GP to read the Nature review: https://www.nature.com/articles/s41579-022-00846-2 and despite being motivated to help, they have no actions they can take.

Why? because nothing has been approved by NICE, because of lack of research funding to do the studies to get the meds approved.

I am now very unwell and very frustrated and it feels like we are going in circles, and hitting one block after another. It just grinds me down. The speed of change is such that evidence suggests treatments are going to be years. Decades. Without funding for research and accountability for past failures, I cannot see the status quo changing for the immediately foreseeable future.

That's why I have stopped thinking the cavalry are coming. So I have to accept where I am and make the most of it. I need to focus my very limited energies on having some joy in my life now, having some meaning now as there probably won't be much of my lifetime left to enjoy when that change finally comes.

Yeah.

 

[Kitty]

That's why I have stopped thinking the cavalry are coming. So I have to accept where I am and make the most of it. I need to focus my very limited energies on having some joy in my life now, having some meaning now as there probably won't be much of my lifetime left to enjoy when that change finally comes.

I think this is a good approach if you're able to take it.

It didn't ever occur to me that the cavalry might be coming, and maybe that's been helpful in an odd way. I got ill in the mid-70s, and ever since diagnosis I've expected to live with ME for good. So I enjoy what I can, if I can, and try (with varying degrees of failure) to get through the times when the window's so tiny there's barely any view at all.

But my window's never been non-existent in the way experienced by Whitney Dafoe and so many others. I've had what in my own terms is unrelenting, depressing, rock-bottom function for 7 to 12 years at a stretch, but never the level of illness they have. I struggle to imagine even getting through a few hours of it.

 

[Ash]

I think this is a good approach if you're able to take it.

It didn't ever occur to me that the cavalry might be coming, and maybe that's been helpful in an odd way. I got ill in the mid-70s, and ever since diagnosis I've expected to live with ME for good. So I enjoy what I can, if I can, and try (with varying degrees of failure) to get through the times when the window's so tiny there's barely any view at all.

But my window's never been non-existent in the way experienced by Whitney Dafoe and so many others. I've had what in my own terms is unrelenting, depressing, rock-bottom function for 7 to 12 years at a stretch, but never the level of illness they have. I struggle to imagine even getting through a few hours of it.

I didn’t realise you’d had your diagnosis that long, for some reason, maybe because you managed to keep working, now I want to know everything about how you think the doctor/social attitudes have or haven’t changed?

For me it’s been two mere decades, not working though so much more hostility on that account than even illness perhaps, for me the drs are worse but other people are better.

I also expected from day one too few would help us for a positive outcome. But I had enormous faith in my own ability to spontaneously recover, or trial and error my way back to full heath and fitness.

 

[Hubris]

Do you all really believe there is no hope of a treatment? That Scheibenbogen and other European researcher's will turn up nothing in their trials?

What makes you all so sure that current trials for LC will not work for mecfs if they find a successful treatment.

Scheibenbogen is doing the correct thing trying immune drugs, but we would need 10
Scheibenbogens to have a realistic hope of getting treatments from there. We need to be relentlessly trying all sorts of immune drugs (because we are stabbing in the dark), not just one or two every once in a while. Progress is way too slow. And some drugs are difficult to blind as well making the results hard to trust (in other illnesses you just have objective markers).

There are some interesting trials in LC, but I always fear that those researchers are throwing together different illnesses. If only (let's say) 1/3rd of the people in those trials have ME, it's unlikely we would see an effect even if the drug did work. And that's of course assuming it's properly blinded and all and the results can be taken seriously.

A treatment study in ME is a bit like a lottery ticket, you can win but you have to buy a lot of tickets to have a chance...

 

[duncan]

Blunting immune responses theoretically can bring its own set of problems if there is an active - or reactivated - pathogen involved. This seems particularly relevant to LC if Covid persists in privileged sites, but also for lots of other things including ME/CFS and other neurological disorders that may involve active infections.

Nice to quell symptoms, though, and who knows? Maybe we can straddle that rift.

If it's down to an aberrant immune response, then no harm, no foul.

 

[Kitty]

I didn’t realise you’d had your diagnosis that long, for some reason, maybe because you managed to keep working, now I want to know everything about how you think the doctor/social attitudes have or haven’t changed?

I've had the illness that long, but not the diagnosis. That took over 20 years. But by then I'd worked out I wasn't going to recover permanently anyway (I'd had remissions but then relapsed again), so it came as a relief to have a name for it. My auntie lived with the same symptoms for longer than I have and never got a formal diagnosis.

Doctors' attitudes have changed, mainly in that some of them used to admit openly that they didn't know what was wrong. However, I was sent to four different psychiatrists by an eejit GP who was trying to get a diagnosis of anorexia nervosa (I was underweight due to digestive issues but have never had an eating disorder). The psychiatrists were supportive, quickly decided I didn't have AN, and the last one wrote a stroppy letter to the doctor to tell him to stop referring me to different clinics in an attempt to get that outcome. He also found me a much better GP.

In the 90s it shifted, and they tended to want people to try antidepressants. I did; they didn't work, and some made me feel worse, so I stopped. However, the same GP had a very poor opinion of the local ME clinic because it used structured exercise classes, so not all bad.

Social attitudes among people I've known have remained broadly the same, if a bit better informed now because of the internet and then social media. I haven't really experienced bad attitudes, just a few people thinking they understood when they didn't (but they were at least trying).