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I am so fed up with people claiming to absolutely know what causes #mecfs. People, we don't know for sure yet! We are getting closer to knowing, lots of leads and good research, but arguing that you know and that everyone else is wrong is ridiculous!
I have seen so many people say 'It's Lyme', 'It's mould', 'it's thyroid', 'it's CCI', 'it's enterovirus ONLY', 'it's EBV', 'It's not EBV'... There isn't enough scientific evidence for any of those claims. People seem to have different triggers. We don't know for sure.
If you're not an appropriately qualified scientist, I'm really sorry but you aren't qualified to claim to absolutely know what the cause is. Also, even qualified scientists don't know. You might knot what triggered your own ME, but that doesn't mean everyone else is the same.
I am 99.9% sure that mine was triggered by EBV. But that doesn't mean that all cases are EBV triggered. Sorry for the rant but I don't think it helps to make these huge generalisations. ME is a complex disease, we don't fully understand it yet, and diagnoses are messy...
Researchers are making good progress, but the state of scientific knowledge is not yet at a place where we can definitively assert the cause. Just because something was found in one study, doesn't necessarily mean it applies to all patients. We still need much more research.
And there are problems with many of the diagnostic criteria, even the ICC, so people arguing about who has ME, who has CFS, etc is also messy. Both people people with ME and people with fatigue caused by other things can be diagnosed with ME or CFS or ME/CFS.
Post-exertional malaise seems to be a good differentiator, but most people haven't undergone substantial diagnostic testing so I think things will only clarify once we have more research with well-defined cohorts and matched controls, then appropriate diagnostic tests.
Even diagnostic tests can be wrong, but things will become more clear once we have some. In the meantime, arguing over case definitions and who does or doesn't have ME is a bit futile... Of course the Oxford criteria are crap, there are many valid discussions happening...
And it's extremely important to discuss case definitions. But the truth is we are still in a messy place where things still need disentangling through high quality research. The disentangling has started and progress is happening, but we don't absolutely know many things yet.
So I guess my plea is to please stop claiming that you know the cause, or that your ME is the legitimate one and other people's ME isn't... There are hugely important discussions to be had about case definition and diagnostics, but we are all sick and we all need answers.
And the way to get answers is through large scale, high quality research with well defined cohorts and proper controls. Sweeping generalisations based on anecdotal evidence aren't very helpful, in my view. And please, feel free to disagree but please don't go swearing at me.
I'm so sick of people being cruel to each other. Disagreement and discussion is healthy, but I got told to STFU the other day by another patient who also blamed me for everyone else's suffering because I said we shouldn't have been claiming to know what happened with Dr Montoya.
... before we had more details. So as a patient I am asking other patients to please discuss, disagree, but can we try not to be cruel to each other, and ease up on the making claims about things we don't have sufficient evidence for? These things don't help.
Also, the vast majority of patients do not attack biomedical researchers and are extremely supportive. But I have seen one or two nasty comments about biomed researchers lately. Let's not do that! They are researching our disease which is what we want, so let's not put them off!
Let's engage productively with them (most patients do so this isn't a generalisation). It's a really tricky power relation because on the one hand we have a history of very poor quality research conducted and reported (in my view) unethically...
But research is also a highly professional skill - you have to be well educated and to understand the scientific method, research methods and design, analytical methodology, biomedical science, etc. to do good research...
Some patients were scientists before they got sick, and are well placed to interpret research papers and to critique bad research. Others are not as scientifically literate. That's nobody's fault, not judging. It's way too much to expect everyone to be scientifically literate.
Everyone is an expert vin their own experience of this disease. I'm not making some kind of hierarchical judgments here. I'm saying we need to be honest about what we do and don't know. I am not an expert in all aspects of biomedical research.
I am conscious that this can sound judgy or condescending coming from someone with a PhD. That's not my intention. What I am saying is we all know what we do and don't know. I don't know everything, nobody knows everything. We all have knowledge to contribute...
... whether that's from our own experience of living with the illness, or from previous education in the sciences, or in research. But we aren't (myself included) all experts in biomedical research. So of course we can ask questions, debate, etc...
But research is a professional skill that requires a decent amount of education and training to do well. It takes a lot for us to trust researchers, especially given the horrible history of ME research and recent events....
...but we also need to respect that the biomedical researchers are professionals. That doesn't mean they are always right. That doesn't mean we can't contribute (we have a lot of experience to offer!)...
...but it's silly to shout down a researcher who is presenting their study on microglia, because they aren't studying the endocrine system, for example. Research has to be designed in specific ways, and follow specific processes...
...a lot of thought will have gone into the study design. So if we don't understand why they aren't studying 'x', by all means let's ask, make suggestions, engage in discussion, but let's not shoot researchers down if we don't understand the research process.
My caveat is that if the study or researcher is blatantly unethical or harmful, I'm not going to defend that. I am guilty of shooting down biopsychosocial research because of its indefensible flaws... I'm talking about engaging productively with the biomed researchers...
...whose work we need and want, and who our future health largely depends on. Most people engaged really constructively so this isn't aimed at everyone. But I have seen a lot of nonsense recently... We need less dogmatic nonsense in ME discussions.
This is a controversial issue and I suspect I will be shot down for trying to 'police' discussion. I'm not telling anyone what to do. Everyone makes their own choices. I'm just sharing my views as a member of the patient community about what I think would be helpful.
Despite my comments above, I also have deep respect for the resilience and strength of people with ME. To suffer in neglect and ridicule for decades is indescribably hard, and I completely understand why people get angry. I also have a bottomless pit of rage...
...one day, future generations will benefit from the health equality that current and past #pwme have fought for and lost lives over. Anger is the natural response to such a horrendous situation. I have had ME for nearly 10 years...
...so I don't know what it was like for people in the 80's and 90's. I have only seen the neglect of the last 10-12 years in the UK since my mum got sick in 2008, then me in 2010. I have a lot of anger about how we and other patients, especially children and those sectioned...
...have been treated. Change seems to be happening now with advances in biomedical research efforts, and that brings hope which is a wonderful thing. It also puts the neglect of the last decades into stark contrast... For me that's a lot of emotion at times...
... researchers at my university are setting up a biomedical research programme which is wonderful. But it highlights the absurdity even more that at the same time my doctor in the university health service is trying to push me into CBT... Anyway, things seem to be changing...
...and the wonderful progress makes the years of neglect, and ongoing neglect, seem even worse, because I no longer doubt myself - I know for sure that it's just plain wrong. I don't know whether others experience that...
...but I feel like we have necessarily had to have been in 'defensive' mode for a long time, and that is still necessary in many areas. But also there are amazing opportunities opening up to lift our defences... public awareness is increasing, researchers are showing interest...
We have to keep fighting in many arenas... For research funding, for we, against stigma, for appropriate medical care... But in other arenas I don't think it benefits us to fight any more... Rather it can undermine the progress that we want to see...
... I think, where people have shown that they genuinely want to learn from us and help us, that we need to get out of fight and defence mode with them, and to foster an open, constructive collaboration. Most people do that, so again I'm not generalising to everyone...
...but my feeling is that times are changing and as a community we need to renegotiate our attitudes and approaches. Still need to fight against the evils that are still occurring. Still need to refuse to take any crap...
...but we need to stop fighting people that we don't need to fight. We will make more progress by working together, treating each other with respect, and working constructively with researchers. Maybe that's the end of my rant... 😁
I might get a third wind later... lots of thoughts... 😂
