How research directions and patient experiences connect to the terms ME, CFS and future names

Jonathan Edwards said:
This Times piece was an opportunity to completely ignore the BPS people
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But we don’t have thst luxury. Just a few months ago I tried to get help from my GP, to build a relationship built upon good information like our fact sheets and science. They suggested referring me to a psychologist, then they eventually sent a phlebotomist to do some pointless tests I didn’t need (but which they can tick a box so get paid for pretending they’re caring for me) and on that visit I was told by the that person that ME is caused by stress.

We would love to be abke to ignore the BPS unfortunately it is still shoved in our faces when we do.
 
hotblack said:
Isn’t the that obsession a backlash to some other things that have happened. You may have a point but perhaps are missing a rather importsnt part of the picture and the root cause.

We didn’t start the fire.
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I don't think so. Right at the start of the Wessely phase he made this speech about "ME" just being folklore - a disease that consisted in believing in a non-existent disease. "CFS" was a deliberate reaction to the claim that there was a special disease called ME due to a mystery virus like AIDS.

And at that same dinner speech Wessely acknowledges that people with CFS really were in deep trouble. At that time he was researching genetics - MHC genes etc - and other biomedical things. The CBT empire came later.

The ME folklore has remained unchanged since about 1980, although it has been more recently embellished with EDS and MCAS etc.. I think it was mostly maintained by a tiny group of physicians who knew Melvin Ramsay - who were linked to MEA. How Action for ME came to be called that I really don't know, but it goes back a good while to a time when it seemed mostly advised by BPS-leaning professionals.
 
hotblack said:
The root cause of this problem lies elsewhere.
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But the root cause is buried in history. We need to change the current dialogue from groups of people hurling nonsense at each other to getting things right. We are breaking through in terms of getting research set up. The task just now is getting the message across to the funding establishment that the science has changed. Talking of ME prevents that.

I have mentioned in the past that NIHR was set up as a tool for funding poor science that was politically convenient. We now have HERITAGE doing just that because the establishment think rehab will keep the patients quiet and not bothering doctors too much or costing money. A year ago advocacy groups were happy to call for multidisciplinary teams in the community handing out nonsense. The talk has changed - the focus is on very severe, and on needing physician involvement. The published comment from Beth Dobbin almost certainly reflects that change. We are making progress. But we need a much bigger shift - "Now that we are talking about ME/CFS, and have scientists who actually know what they are doing building a consensus on how it comes about and what treatments are genuinely evidence-based we can save you billions by throwing all this rehab in the bin thank you. We need some doctors who can think and can give patients honest advice and keep the very sick alive." If it becomes clear that patients realise they are just being kept quiet and don't want it then the political convenience changes direction.
 
I am all for not making s big deal of the BPS angle. For not focusing on it as much as we sometimes do here and in the wider community. But to say we can ignore it entirely is just blind to the reality of the world we live in. We have the attitudes we face whenever we seek help, dealing with the NHS, the DWP etc, we have people suffering needlessly, then we have the HERITAGE trials ongoing, the Elaros apps and their nonsense. Are those ignoring the BPS and based in then science? It is still deeply embedded in attitudes, institutions and approaches.

I hope we can move beyond this. I do think our focus should be on the science, should be on the wonderful research taking place, on the doors that are opening snd the need for investment here. Thst is where the answers will, come. But until we have them we live in the world we do and have the challenges we face day to day. So this idea that we can ignore the harms we live through every day and what they are rooted in is naive or idealistic. Either way it is not possible. It is not a choice we have.
 
obeat said:
I was diagnosed in 1990 and told that it was a hypothalamic disorder by an immunologist.
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The crying shame is that it seems that the biomedical research has been chasing blind alleys since then and the useful data were staring us in the face all the time. The biomedical research was making headway in 1995. And I am pretty sure that the reason we have all these studies of autoimmunity and mitochondria and muscle failure are driven by the ME folklore from the advocacy organisations.

ME = neuroinflammation. It's as trivial as that.
 
Jonathan Edwards said:
You are off on a tangent. I am talking about the handling of an important newspaper piece that could have achieved much more.
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Not really no. I understand your perspective but please don’t be as dismissive of others. As well as pushing the science we need visibility of the world we live in and problems we face day to day, we cannot and should not ignore half of the picture. This was a call for government action from a patient and we desperately need both parts.

There are no effective treatments for ME/CFS, we need research investment to find them and until we have them we need appropriate care and support.
 
hotblack said:
This was a call for government action from a patient and we desperately need both parts.
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It was a call from a patient orchestrated by advocacy groups that insist on sticking to the ME folklore. I know that I upset people but if nobody upsets anybody we will get nowhere. My upsetting people so far seems to have moved things at least a bit in the right direction so I shall continue.
 
On a purely practical basis we are not going to get patients to let go of some of the unscientific ideas if we don’t offer an alternative here and now for the problems people face.

To those who here and in other threads have pushed back let me try to explain why I think this is important. This forum is a great home of the value of the science, the community believes in it and shares the goals of stopping misinformation. And yet even here the ‘campaign against biobabble’ (or CAB as I’ll call it) and the arguments made by some have not been wholeheartedly embraced. Why is that?

We’ve talked about a shared desire with the goals of CAB and that it would be beneficial if more patients joined as then organisations and charities wouldn’t themselves face pressure to push unhelpful messages. But CAB seems to be getting few new signups. There is even an anti-CAB movement. Why is that?

I think it is because desperate people cling on to whatever they can. A drowning person will cling to a piece of driftwood with nails in it. And if you want them to let go of that you need to offer something at least as good. Not just tell them to let go of it.

Saying it is unhelpful to hold on to a piece of wood with nails in it that may harm them isn’t going to convince them, even if you have the knowledge that a ship is on the way to rescue them and just over the horizon. You are offering nothing more than faith, faith that something better will come along. And if you criticise them for not believing or not understanding, all you do risk pushing them away and them holding on to that flimsy wood with its rusty nails even tighter.

So for CAB to succeed it needs more than it is currently offering people. The problem is not that people aren’t listening or are somehow not as enlightened or informed as members of CAB. It is that humans are humans and the message is not convincing enough, even for some here let alone the wider community. We need to fix that and offer a palatable but solid alternative. Something better for people to hold on to here and now while we wait for the science to deliver better. I don’t think this needs to be much because things are so bad right now. But we need something.
 
Jonathan Edwards said:
The crying shame is that it seems that the biomedical research has been chasing blind alleys since then and the useful data were staring us in the face all the time. The biomedical research was making headway in 1995. And I am pretty sure that the reason we have all these studies of autoimmunity and mitochondria and muscle failure are driven by the ME folklore from the advocacy organisations.

ME = neuroinflammation. It's as trivial as that.
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About the name of the disease: regardless of the origins of the names ME and CFS, they have both come to mean ME/CFS (as in the new concept you outlined in your paper). ME/CFS for virtually everyone means ME or CFS, all three terms mean the same thing these days. Are there really doctors who are even that aware of Ramsay's definition? I think if they hear ME they just translate it into their mind to chronic fatigue syndrome or more likely just chronic fatigue. ME doesn't mean neuroinflammation just as lupus does not mean you are a wolf and cancer does not mean you have a crab growing on you. Also if you were to slighty modify to ME to be Myalgic Encephalopathy you suddenly have a relatively apt description of the disease. The name Chronic Fatigue Syndrome still sucks because it misses much of the core symptomatology and sounds derogative. Justin Reilly's line of it being like calling alzheimer's 'chronic forgetfulness syndrome' is a good analogy I think.

Jonathan Edwards said:
'complex neuroimmune disease that affects multiple body systems'
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Yeah I think this is muddled too but I suppose when you get down to it it's just the 'affects multple body systems' bit that is straightforwardly wrong. ME/CFS is a complex disease in that it is not Mendelian, and it is neuroimmune in the sense that it involves neurons and is triggered by infection in many cases. You could say the symptoms are experienced across multiple parts of the body. I'm playing devils advocate a bit on this one.

My main query here is: how sure are you that the disease is not taken seriously specifically because of issues around its name? You are much more clued into the views of other clinicians so you would know better, but the impression I get - also from Audrey's reporting back from when she spoke to clinicians with you at UCL - is that doctors are unconvinced there is a disease category here of any sort at all.

Jonathan Edwards said:
I am not so sure. People like Leslie Finlay and Tony Pinching understood the prognosis from seeing hundreds of people in the 1990s. Putting numbers on that does not make so much difference.
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To that end @ScoutB 's point about the lack of epidemiology done at the time is a really important point. Even if it was quietly recognised by some of these people that is no use because they're gone and we don't have the data. We don't have basic information about eg prognosis and causes of death. The best we have to my recollection is one small study on 17 deaths with ME/CFS by white and colleagues. I think the epidemiology picture we have now: predominantly infectious onset, female bias, bimodal age onset distribution, quite specific sets of comorbidities (IBS, fibro, hypothyroidism) are a really important argument in favour of this being a distinct clinical entity that does not resemble other diseases like depression or MS - not to be handwaved away as 'chronic fatigue.'
 
hotblack said:
On a purely practical basis we are not going to get patients to let go of some of the unscientific ideas if we don’t offer an alternative here and

So for CAB to succeed it needs more than it is currently offering people. The problem is not that people aren’t listening or are somehow not as enlightened or informed as members of CAB. It is that humans are humans and the message is not convincing enough, even for some here let alone the wider community. We need to fix that and offer a palatable but solid alternative. Something better for people to hold on to here and now while we wait for the science to deliver better. I don’t think this needs to be much because things are so bad right now. But we need something.
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At the PRIME symposium someone asked a question about whether the disease was 'biological' or 'neurological' (by which he meant psychological) which I thought was a little telling maybe. The terms neurological, psychiatric and psychological seem to easily get conflated. I think there is a push back in the ME/CFS patient community against the idea of it being a neurological or psychiatric disease because of the implication that it could be a disease controlled by thought, which or course it isn't.

It being a disease of the brain can feel quite personal, like it's your fault somehow. This cuts both ways too because I think it can also be tempting for society and clinicians to think that way about patients.

Maybe trying to get language clear around that, disambiguating those terms and finding a clear message could be important. A disease of neurons in the brain probably, and not a disease of thinking or behaving incorrectly.
 
Jonathan Edwards said:
It was a call from a patient orchestrated by advocacy groups that insist on sticking to the ME folklore. I know that I upset people but if nobody upsets anybody we will get nowhere. My upsetting people so far seems to have moved things at least a bit in the right direction so I shall continue.
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I think we’re extremely grateful for what you do, including upsetting people and ruffling feathers, you are a fantastic advocate and a great fighter. I consider us lucky to have you on our side and will stand by you in the majority of what you do and say.

But have you considered the possibility that there is something for you to listen to here, on the forum? That there may be something of value in what people are trying to tell you and that rather than always arguing with it and saying you’re just telling people hard truths that listening or trying to understand it may help? That it may help you make your argument better? May help convince more people? May help us all?

It may not, maybe you need to remain single minded here and I’m wrong. Or maybe I’m missing your point. Your perspective and the circles you move in are different to most of us. But this seems to crop up regularly and not just with me although I am aware I have been banging on about it. And since you like saying it like it is I’m saying it like I think it is here but just like you it comes from a place of wanting to help.
 
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chillier said:
Maybe trying to get language clear around that, disambiguating those terms and finding a clear message could be important. A disease of neurons in the brain probably, and not a disease of thinking of behaving incorrectly.
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That’s a good point. And it probably is something researchers in other fields don’t have to face. The history and baggage that exists as well as the context is sadly a barrier for researchers as well as patients. And language seems to matter more than in other cases. I hope and seem to have seen in the WE&ME discussions here tthat those approaching it with at least some awareness are met with a warm welcome. Even if we can get into some heated debates at times!
 
Jonathan Edwards said:
I am beginning to see that this narrative is not quite right. People like Ted Dinan were doing very good research into CFS aka ME/CFS in the 1990s in psychiatry units. They had funds. Dinan continued in Ireland until around 2010. He has only just retired. Richard Edwards worked on the muscle side of CFS aka ME/CFS in the 1980s and 1990s and found nothing, despite having a large unit at UC funded by MRC. Ten years ago I racked my brains to think what research on the biomedical side would actually be worth doing and I couldn't think of anything. It was only when the GWAS was proposed that I saw that was something that should have been done earlier.
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The buspirone research was abandoned for no good reason, as were the DRG autopsy findings.

There should have been a medical research effort at scale over decades as there was for other diseases with a similar impact. It is impossible to say what progress could have been made by now if we had had the same attention as other illnesses.

Fluge and Mella have barely managed to get daratumumab funded. One of the best younger researchers in the field has just left because he couldn't get funding. SequenceME has not been fully funded despite the success of DecodeME. So it is not just about there not being good projects. The MRC proved that to be a lie a year ago.
Jonathan Edwards said:
I don't think so. Right at the start of the Wessely phase he made this speech about "ME" just being folklore - a disease that consisted in believing in a non-existent disease. "CFS" was a deliberate reaction to the claim that there was a special disease called ME due to a mystery virus like AIDS.

And at that same dinner speech Wessely acknowledges that people with CFS really were in deep trouble. At that time he was researching genetics - MHC genes etc - and other biomedical things. The CBT empire came later.
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I know you are something of a contrarian but revisionist rehabilitation of Wessely and his treatment of pw ME/CFS is beneath you. Wessely maintained such a distinction only rhetorically in order to divide us into 'good ones' who were compliant with his treatments and 'bad ones' who were not. The CFS moniker was the first step on the road to the BPS plan dissolving us into idiopathic chronic fatigue and disappearing us from medical view. Sharpe spoke about this.

Appearing to legitimise this distinction between good patients with CFS who deserve care and bad patients with ME who don't is offensive and unwise, however angry you are with biobabblers, and frankly runs the risk of turning patients and advocates against S4ME at a time when we are finally starting to get a voice at the table research wise.

The idea that ME/CFS is the best current descriptor of this illness is a strong one. The argument that CFS is, and all the people researching 'CFS' actually had our best interests at heart is a weak and doomed one, even if you have found some good quality overlooked papers into 'CFS'.
 
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