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

[Lou B Lou]

Yes, but the final paragraph was fair enough. We need to disentangle different issues and not tar everything with one brush.

We need to recognise the strategies used to install CBT/GET as The treatment, until 2021. And still is the treatment by various other names, by sleight of word (one of the hallmarks of BPS)

 

[Felis Catus]

GPS, nurses, consultants in hospitals, ‘specialist’ services, pretty much everyone patients interact with in the NHS.

And then those people give you letters and fit notes with "chronic fatigue" on them which you send to work, work occupational health, DWP and social care services to use for assessments. If your GP wrote that you have "chronic fatigue", why would DWP or social care services think you had ME/CFS?

 

[Jonathan Edwards]

And if we can't get the advocacy groups to take that approach, we're just left with ourselves.

We have a lot more power than it may appear.

Change is slow but it isn't that slow. It is only just a year after DecodeME reported. WE&ME have had over fifty applications for a grant call, a dozen of which are really good. PRIME seminars are putting out amazing presentations - including one from our own Hutan (not to mention the professional science members here).

 

[hotblack]

The charities might not back it yet but the more PwME start to take and talk about the accurate view of things, the harder it will be for charities to avoid joining it. Like influencing government, it's a process that begins at the grassroots.

That was my feeling. It would need a multi pronged approach of influence or indeed changes at the top but also a shift in he support base.

There are no effective treatments for ME/CFS, we need research investment to find them
Charities and advocacy groups need to get behind this message
But this all requires some faith from patients. It can’t be done in a vacuum. It’s jam tomorrow to many and misses half of the equation which is our day to day struggles and the suffering seen
So we add: until we have those treatments we need appropriate care and support (I’d advocate for part of that being dismantling the entire system of current ‘specialist services’ too. But again that sort of leap of faith needs something else in return to get buy in from patients and charities)

That second part is important to keep us going, but also to help people let go of supporting the calls for things which are unhelpful. That’s my logic anyway and why I think the strategy needs a shift and the messaging from @Jonathan Edwards and others maybe needs a tweak. I can’t see how just saying ‘trust the science’ will work alone, in isolation.

 

[Jonathan Edwards]

We need to recognise the strategies used to install CBT/GET as The treatment, until 2021.

We all recognise that the words were used in that cause, but the basis of the CFS term itself, as given there, is perfectly fine.

 

[Kitty]

We have zero influence on anything

I don't entirely agree.

We're influencing the researchers on the WE&ME programme. They're all listening, and some of them obviously started well before they got here.

They might not find a crack to get the crowbar in, but they and WE&ME are still changing research practice in an important way. Those researchers will take what they learn into their careers, they'll talk about it at conferences, they'll use it when they're seniors supervising PhDs. That's influence.

 

[hotblack]

We have a lot more power than it may appear.

Change is slow but it isn't that slow. It is only just a year after DecodeME reported. WE&ME have had over fifty applications for a grant call, a dozen of which are really good. PRIME seminars are putting out amazing presentations - including one from our own Hutan (not to mention the professional science members here).

This is very true. There are fantastic things happening in research. And you have been a great help there. As well as everyone else on this forum, be they patient or researcher, if they have got involved in the discussions or just read them. Everything and everyone’s involvement has helped.

 

[Robert 1973]

Yes, that seems to be the point where the CFS concept move on to a CBT target. Wessely was still working on MHC genetics at that point but the shift had occurred.

I don’t want to take this discussion off-topic but someone in my family attended one of SW’s talks for GPs in about 1994. They were truly shocked – arguably traumatised – by the contempt he showed for patients. They told me that we was ridiculing patients for laughs.

I’m also reminded of his interview on The Life Scientific when he said that the neurologists at Queen Square were pleased that he took on their ME/CFS patients because “nobody liked them”. I think that would have been about 1989.

It may be true that he was interested in biomedical ME/CFS research at that time but it seems that he was happy to assume that there was no pathology which prevented recovery unless research or tests provided evidence to the contrary and to treat patients accordingly. That is not a scientific or ethical position.

I understand the issues with calling it ME, but I my impression is that the term CFS was coined to downplay the seriousness of the illness and present it as being amenable to rehabilitation.

I agree that ME/CFS is the best option for now – albeit one that is a far from satisfactory.

 

[Robert 1973]

But what you write here isn't succinct and drawn together into a single article. It's bits and pieces here and there, and if all it is is a few forum posts, it's not presented as something that should carry weight.

It's just like writing for Queios - your Quieos pieces probably contain mostly things you've said here, scattered about the forum, but it's bringing them together as a single thing to read that makes the concepts accessible and impactful.

I strongly agree with Sasha that such an article or blog post would be extremely helpful.

 

[Jonathan Edwards]

I understand the issues with calling it ME, but I my impression is that the term CFS was coined to downplay the seriousness of the illness and present it as being amenable to rehabilitation.

I don't think that was the case. My reading of the history is that there was a choice of continuing with the ME term, which wasn't even intended for ME/CFS (it was intended to be an acute neurotropic viral illness) or have a term that covered the syndrome of ME/CFS without requiring any implication about aetiology or relation to infective illness.

Wessely's behaviour was appallingly tactless throughout and I think he came to realise that to a degree. My memory is that he was being rude about people well before 1990. But that is a different issue. The issues need separating.

What Wessely thought about the pathology is quite difficult to work out. He deserves recognition for having done genetic studies at a time when I don't think anyone else was.

 

[Jonathan Edwards]

I strongly agree with Sasha that such an article or blog post would be extremely helpful.

I am struggling through data papers on ME/CFS. Why doesn't someone else write an article? Other people can make the same arguments as I. I don't have any citable data that nobody else has.

 

[Eleanor]

Surely this is the job of the advocacy groups, not me. Some of them are paid a salary to write stuff about this. The advocacy groups won't touch it because it is 'too negative'. And that is the problem this whole discussion is about.

There's still a sort of 'don't shout it out or they'll all want one' attitude, isn't there.

 

[obeat]

How many active members here are also actively involved in decision making in the umpteen advocacy groups ?

 

[Eleanor]

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.

I hope the answer did something to clear up that confusion!

 

[Sasha]

I am struggling through data papers on ME/CFS. Why doesn't someone else write an article? Other people can make the same arguments as I. I don't have any citable data that nobody else has.

We can't write an article about what doctors really think behind the scenes because we don't have that direct knowledge, but I accept that you'd prefer not to. I'd much rather that you kept on going through data papers to move the science forward, and, as ever, I'm hugely grateful for everything you're doing for us.

 

[chillier]

I hope the answer did something to clear up that confusion!

You can see the clip here! Starts at 35:57. I think everybody just got a bit confused to be honest.

 

[Utsikt]

I don’t think anyone is arguing for those things, not that I’ve seen in this thread. We all want to reduce misinformation.

Rvalle said that we can’t focus on real science while they are out there accusing us of all kinds of things (my addition: and using pseudoscientific BS methods).

Surely the best defence against that is to focus on the science when we answer them instead of myths.

If we say «you are wrong because of [myths]», we might still be right about that they are wrong, but when our argument for why is also wrong most onlookers aren’t going to change their mind in our favour. I believe more people will chance their mind if we use sound arguments, even though most will still not because of human nature. More people changing their mind is still better than fewer people, and can make a meaningful impact.

The point being made is the same one that has been made dozens of times here and it is pushing back against an obsession or blind spot that seems to exist. Even if we were able to completely eradicate those ‘biobabble’ views (which no disease has managed to, they all have some doctors and patients with some odd ideas) we would still be treated poorly. The root cause of this problem lies elsewhere.

That strikes me as unfounded pessimism and defeatism. It’s not a quick fix, and it won’t stop the abusers themselves, but it might affect the people that do not abuse us and have the power to help us against the abusers.

This is why I don’t think it’s about what we say to doctors, it’s their preconceptions and misunderstanding that are the problem. I agree it’s dangerous and exhausting. But sadly what we say does not matter, we can’t fix this by using the right magic words.

@rvallee also:

People are too fixated on the fact that the abusers won’t ever change, and forget that there are many neutral potential allies out there, and that how the advocacy is done has a real impact on the likelihood of them working for us instead of ignoring us.

It shouldn’t be that way, it’s deeply unjust, but it is.

I think I’m just repeating myself now, so I’ll stop here.

 

[hotblack]

That strikes me as unfounded pessimism and defeatism. It’s not a quick fix, and it won’t stop the abusers themselves, but it might affect the people that do not abuse us and have the power to help us against the abusers.

It’s really not intended in that way. If it came across like that I’m sorry. I’d hope my wider point on what is needed is clearer on where the balance needs to be on this argument. If not happy to try to clarify another time (we’re both tired now) or drop me a message sometime, I get all the points you make and hope we can change the neutral parties, I agree there are many out there. It’s even an argument I have made here before.

 

[Utsikt]

It’s really not intended in that way.

I think it’s the bit about the root issue not being possible to affect through changing how the advocacy is being done. So we were probably talking about different issues, I was talking about making progress in how society at large is dealing with ME/CFS, and you were possibly talking about stopping the abusers specifically.

I think we both agree that we can affect the former without having to affect the latter.

 

[Mij]

"Beth Dobbin's Parents' Message: A personal account of Beth's severe ME/CFS & its impact on their family."