The times they are a changin'...

[ME/CFS Skeptic]

Yesterday the Belgium assessment report from the ME/CFS centre in Leuven came out.

There are a lot of bad things in this report. CBT was for example said to be successful when the improvements were probably no larger than natural progression of the disease (discussion of the report here). But there were also some positive elements in it. It argues that the oxford criteria are flawed and that GET should no longer be advised. It acknowledges the problems with the PACE trial, the shift towards biomedical research in other parts of the world, that some biological anomalies have already been shown and that ME/CFS is a debilitating disease. Coming from the fiercest BPS-stronghold in Belgium I see this as a positive development.

I’ve only had a quick look at the Australian document but my impression of it was similar. Lots of frustrating elements in it, but overall the progress is obvious (discussion of the report here).

The same can be said about the 2018 report by the Dutch Health Council, which called for a shift towards more biomedical research – something that was taboo only a few years earlier.

In the US the AHRQ has updated their treatment overview, excluding research that used the Oxford criteria. The CDC has removed its GET/CBT recommendations and now says that “ME/CFS is a biological illness, not a psychologic disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain. These patients have multiple pathophysiological changes that affect multiple systems.” The NIH has more than doubled its funding of ME/CFS.

In the UK NICE has overruled the advice of its experts and listened to the stakeholders: the guidelines are going to change.

It seems to me that since the 2015 IOM report and the reporting of Tuller and Coyne on the PACE-trial, there has been some progress. That may not always be visible because of the many setbacks on the way and the long road ahead. I just wanted to highlight the general trend here.

Yes, David Tovey’s recent response was disappointing but let’s not forget that Cochrane did not approve the Larun et al. resubmission and currently states that the review is substantially out of date and in need of updating. There are some bad people on the NICE committee but there are also 5 (!) lay members with full voting rights.

Perhaps it’s time to record a new Bob Dylan song. Because the times they are a changin’…
@Robert 1973

 

[ME/CFS Skeptic]

I’ll probably get criticized for being naïve in posting this. It’s not that I don’t see many problems or how far we actually are from understanding and treating this disease. Just thought it was worthwhile to zoom out for a moment and reflect on how things are going.

 

[Trish]

I think it's good to mark the fact that some positive changes are happening in some countries.

In the UK NICE has overruled the advice of its experts and listened to the stakeholders: the guidelines are going to change.

We don't know yet that the guidelines are 'going to change', only that they are being reviewed. I hope you are right, and they change considerably for the better.

 

[ME/CFS Skeptic]

We don't know yet that the guidelines are 'going to change', only that they are being reviewed.

I see it differently. I think the review has allready taken place. It was concluded that new guidelines needed to be written to reflect recent developments. Correct me if I'm wrong but the assignment of the committee members is not to look at the 2007 guideline and see if it needs any changes. They have to start all over again.

NICE isn't going to spend 2 years on committee selection, drafts and consultations to change nothing in the end. Think the question is more: how much will it change.

 

[Sly Saint]

NICE isn't going to spend 2 years on committee selection, drafts and consultations to change nothing in the end.

hmmm; Brexit (?)

eta: this kind of thing actually happens a lot in the UK.

 

[Esther12]

There's definitely been some progress, but if a lot of it is just adaptions to tone and the claims made public, while the same old people keep their positions of authority, then a lot of the signs of progress could make little difference to patients on the ground.

We need to keep pushing as carefully and persuasively as we can to achieve the sort of substantial changes that are needed, and that many powerful people and organisations are working to resist. Thanks so much to everyone who has been able to contribute.

 

[Cheshire]

There's definitely been some progress, but if a lot of it is just adaptions to tone and the claims made public, while the same old people keep their positions of authority, then a lot of the signs of progress could make little difference to patients on the ground.

Yes, in France, in the last few years, the authorities have completely changed the guidelines for autism, and put to the bin the crazy psychoanalysis theories. But in reality, the social and medical personnels haven't been replaced and are still in place, thus the treatment people with autism and their families receive is still dreadful in many cases.

 

[andypants]

I’ll probably get criticized for being naïve in posting this. It’s not that I don’t see many problems or how far we actually are from understanding and treating this disease. Just thought it was worthwhile to zoom out for a moment and reflect on how things are going.

I don't think you are – progress is faaaar too slow, but there is definitely progress. From where I sit it looks like much of the negative stuff that happens is just the same old crap recycled or reframed, whereas most of the positive news is actually progress and small steps forward. So while the negative stuff doesn't go away it doesn't seem to grow, while progress is being made with things like guidelines and media coverage. Same amount of weeds, but more flowers growing in between.

 

[Hoopoe]

We were hoping for a decisive victory but it's looking more like a partial one. GET and the more nonsensical aspects of the fear avoidance and deconditioning illness model seem to be on the way out. CBT and the general idea that this is at least in part a psychosocial condition is holding on.

Also, I hope the people who think the IOM report is terrible can finally see that it's actually the best thing that has happened in a long time. I doubt that any of these changes would have happened without the IOM report.

We should be pushing for an update to the IOM report every few years. Having a respected organization publishing a review is a good counter to all the bullshit claims that are plagueing this field.

Cochrane seems to be run by people that cave in to pressure from commercial interest groups and is unlikely to help. Best we can hope is that they stop harming us.

 

[rvallee]

NICE isn't going to spend 2 years on committee selection, drafts and consultations to change nothing in the end. Think the question is more: how much will it change.

NICE absolutely would do that if they could, they'd just frame it as "we were right the first time and have confirmed that", but at least there is a real opportunity to prevent it. This is definitely a positive change from their 2017 decision where they just rubber-stamped without even bothering to make a case that it's of any use.

As we know, no one is even monitoring outcomes or recording data so they couldn't possibly make that decision based on real data, they just don't care because no one holds anyone accountable in this area except advocates. Without this pressure, things would be even worse.

 

[Diluted-biscuit]

I’ll probably get criticized for being naïve in posting this. It’s not that I don’t see many problems or how far we actually are from understanding and treating this disease. Just thought it was worthwhile to zoom out for a moment and reflect on how things are going.

Any progress is a good thing, it’s easy to get bogged down in the problems and forget the small victories.

 

[Snowdrop]

Any progress is a good thing, it’s easy to get bogged down in the problems and forget the small victories.

Thing is: I don't feel bogged down in the problem so much as living the problem. For decades.

 

[MEMarge]

Yesterday the Belgium assessment report from the ME/CFS centre in Leuven came out.

There are a lot of bad things in this report. CBT was for example said to be successful when the improvements were probably no larger than natural progression of the disease (discussion of the report here). But there were also some positive elements in it. It argues that the oxford criteria are flawed and that GET should no longer be advised. It acknowledges the problems with the PACE trial, the shift towards biomedical research in other parts of the world, that some biological anomalies have already been shown and that ME/CFS is a debilitating disease. Coming from the fiercest BPS-stronghold in Belgium I see this as a positive development.

I’ve only had a quick look at the Australian document but my impression of it was similar. Lots of frustrating elements in it, but overall the progress is obvious (discussion of the report here).

The same can be said about the 2018 report by the Dutch Health Council, which called for a shift towards more biomedical research – something that was taboo only a few years earlier.

In the US the AHRQ has updated their treatment overview, excluding research that used the Oxford criteria. The CDC has removed its GET/CBT recommendations and now says that “ME/CFS is a biological illness, not a psychologic disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain. These patients have multiple pathophysiological changes that affect multiple systems.” The NIH has more than doubled its funding of ME/CFS.

In the UK NICE has overruled the advice of its experts and listened to the stakeholders: the guidelines are going to change.

It seems to me that since the 2015 IOM report and the reporting of Tuller and Coyne on the PACE-trial, there has been some progress. That may not always be visible because of the many setbacks on the way and the long road ahead. I just wanted to highlight the general trend here.

Yes, David Tovey’s recent response was disappointing but let’s not forget that Cochrane did not approve the Larun et al. resubmission and currently states that the review is substantially out of date and in need of updating. There are some bad people on the NICE committee but there are also 5 (!) lay members with full voting rights.

Perhaps it’s time to record a new Bob Dylan song. Because the times they are a changin’…
@Robert 1973

I totally agree that there is progress. I think the work of @dave30th has been crucial as well.

As for NICE, they were listening and saying the right things at the stakeholder engagement and scoping meetings, but some still say the complete opposite behind closed doors.

 

[Diluted-biscuit]

Thing is: I don't feel bogged down in the problem so much as living the problem. For decades.

Same here but every day life with ME/CFS being utterly miserable and seeing if things are improving research wise and politically are two separate things in my opinion.

 

[DokaGirl]

There is progress, however, what changes have been accomplished are not being disseminated to health professionals. As far as I know, the CDC, NIH, AHRQ, and CIHR have not been proactive in sending every doctor info about the new view of ME. Any health pros I encounter have never heard of ME, nor any of the recent North American updates. Nor do they want to hear them from me.

I don't know if NHS will change anything, I fervently hope so. I see the two year deadline as a stalling tactic.

I think the IOM is planning a 5 year update on ME. Wish it was this year. I agree, even though some feel the IOM case definition is too vague, this report, and the NIH Pathways report are what set the ball rolling.

 

[DokaGirl]

Actually, the IOM and NIH reports were watershed moments, but thousands of activists pushed that rock up that hill for decades. Thank you!

 

[Sunshine3]

I’ll probably get criticized for being naïve in posting this. It’s not that I don’t see many problems or how far we actually are from understanding and treating this disease. Just thought it was worthwhile to zoom out for a moment and reflect on how things are going.

Michiel, I for one appreciate your post. There is so much negativity, it's no harm to look for and highlight the positives from time to time. Thank you. It did me good!

 

[DokaGirl]

I agree @Sunshine3, and @Michiel Tack, it is good to see the collected list of progress.
Thank you!

It would be great to figure out how to effectively convey this to each and every medical practice, probably not possible, but is needed. New pwME need this up to date info too.

That aside, it is heartening to see the changes!

 

[Sisyphus]

“The NIH has more than doubled its funding of ME/CFS.”

2x(Effectively nothing) = (Pretty well nothing)

 

[Andy]

This blog from @Simon M from last year was pretty positive about the future as well

OPINION

Although there are no treatments for ME/CFS on the horizon, things are looking up thanks to recent findings and a substantial increase in the amount of high-quality research. The field still needs much more funding.

https://mecfsresearchreview.me/2018/09/27/a-brightening-future-the-state-of-me-cfs-research/