(ME/CFS): Investigating care practices pointed out to disparities in diagnosis and treatment across European Union - Strand, Nacul (EUROMENE) 2019

full paper here
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0225995

 

https://twitter.com/user/status/1202939605907062784


There are not really that cheap, given that they don't work. But I ran out of space in the tweet.

 

The supplementary material gives an overview of national guidelines and practices on ME/CFS in European countries (each EUROMENE member had to fill in information about their country), but it is mostly a stark lack of guidelines and knowledge that stands out.

@FMMM1 this might interest you.

 

Interesting thanks - I may try to get a look at this --- Bulgaria (EU Commissioner for research/Horizon Europe - Gabriel's country)?

 

That's generous. They have guidelines but those are not based on reality and have terrible outcomes. Technically they count as guidelines but this is about as true as saying a few centuries back that countries had guidelines to deal with sorcery and demonic possessions.

No country has competent guidelines based on actual reality and the needs of patients. I get that the discussion is over what is used in practice, but when guidelines are built on ideology and no better than nothing at all, it's critical to point it out. And as a matter of fact there are no demonstrable differences between countries that have long adopted such guidelines and those that don't even list any variation of the disease anywhere in their entire systems. In part because no one is doing adequate monitoring or record-keeping, which only further shows how such guidelines are useless.

Which means no country has competent adequate guidelines. It's not going to be possible to move forward until it is acknowledged that the last 3 decades have been a complete disaster. The sensitivities and reputation of a few should not continue to outweigh the lives of millions and being frank about how disastrous things are is needed. It will make a lot of people angry, but meaningful change always does.

 

Would ‘harmonisation of guidelines’ across Europe be a good thing when we mainly have bad and potentially harmful guidelines? Does any country in Europe yet have guidelines that a majority of patients would endorse?

We do not have any evidenced based treatments for ME, and what evidence we do have clearly indicates the most commonly officially endorsed treatments are at best ineffective and at worst profoundly harmful. Shouldn’t current guidelines be as much about what not to do and recommending a major research effort to redress the appalling underfunding of meaningful research on the condition so far?

 

Elin B. Strand as main author and Ingrid B. Helland as co author is unfortunately a red flag. Helland leads the Norwegian Knowledge Center for CFS/ME and Elin Strand is part of the team. They are known for a biopsychosocial approach to ME. Last year a petition against the knowledge center with over 7 000 signatures was delivered to the Minister of Health, not that it made any difference..

 

I thought this was an awful paper. Very disappointing to see this produced under the EUROMENE banner. We need something better.

 

Unfortunately, I think that the EUROMENE members need to produce documents to justify funding for the group. The group promotes communication and collaboration so is worthwhile. However, I am doubtful about some of the publications that appear to be endorsed by EUROMENE members as a whole.

Standardisation is not to my mind an objective in its own right. The real objective is getting things right.

 

The awfulness of this paper is not in the idea of collecting information on how each country does things when it comes to ME/CFS. That is useful.

The message should have been that there is an extreme state of neglect and that the fact that every country does things differently reflects a profond lack of knowledge. If we knew what the right thing was, there wouldn't be so much disagreement and diversity in opinions.

Patients also seem to widely regard guidelines, where they exist, as inadequate and often harmful. That this important piece of information is absent from the article is disturbing (I read it the other day and am commenting just now while skimming and hope I didn't miss it). There is no point in harmonizing guidelines when all indicators are that they are not fit for purpose.

Homeopathy is also experienced as helpful by many but completely fails rigorous tests. CBT/GET has never been subjected to rigorous tests. Thanks to the important work by Wilshire et al we know that there serious doubts about the claims of CBT/GET being effective.

 

A few countries only have rehabilitation and self-management programs for CFS/ME patients. CBT, GET or pacing were mentioned as rehabilitative and coping management offered to patients. Both CBT and GET are controversial, and there are disagreements and uncertainty among both patients and health providers regarding the effect of the methods. That these approaches are used as treatment and self-management strategies in ME/CFS patients may imply that even if they do not cure, they are experienced as helpful by both health-providers and patients.

I agree that this is entirely unhelpful - presumably reflecting the preferred beliefs of a main author.

Hopefully nobody will take much notice of it.

 

The last paragraph states

A set of diagnostic criteria are recommended for research and clinical practice (viz. Fukuda, and the Canadian Consensus criteria). ​

How did others interpret this? Is this saying that they are recommending Fukuda for research? I understood that to date, Nacul has used Fukuda AND CCC together so that would be surprising. Or is this saying that research and clinical criteria need to be recommended?

 

One thing that I found interesting is that the IOM criteria were described the only ones to be based on research. At the same time they don't seem to be particularly popular among the participants.

 

It could be worth taking notice of if people like Helland and Strand are going to be shaping EUROMENE documents!

 

Yes, I don't see how they can find a way through to good robust research and/or taking in patient experience when their are ideological/self-interested/politically motivated people as part of the EUROMENE team.

But they do seem to be well aware of this. See here.

 

The EUROMENE biomarker group includes Jonas Bergquist (OMF - Uppsala Sweden) and Carmen Scheibenbogen Charité Berlin. However, some of this is concerning @Michiel Tack @Andy Particularly if the views which prevail don't come from biomarker group etc.

@EspeMor one thing that comes to mind is Jaime Seltzer's (ME Action) take on this approach (from memory) - "these things (approaches) don't work" i.e. PACE CBT/GET didn't get people back to work, university --- so why fund them -- @Tom Kindlon is highlighting the same thing.

Concerning!

 

Maybe I missed some things but so far EUROMENE has been very opaque and underwhelming. It does not actually look like a useful initiative, but it's particularly hard to tell without knowing what is it they actually do and stuff like this report is of the not-bad-but-not-helpful kind.

If there is any context in which actually giving a damn and leading the way in genuine patient engagement, it's ME research. I have heard the term EUROMENE many times and frankly have not much to say about it because we rarely ever see anything coming out of it and this here is not nearly good enough.

Maybe it's just my bad memory and expectations about things-that-are-actually-useful but this is only marginally better from the usual BPS stuff. Maybe it's just lack of funds? Probably, I guess. Hard to say, though.

Frankly, reading stuff like this on their home page does not inspire confidence:

This is at least 2 orders of magnitude off. WTH?

 

I believe it could grow into a very good organization for us patients, especially if we help shape it. We need to tell them what we want.

 

Reasonable summary @rvallee in my view.

@Jonathan Edwards had an insightful take on EUROMENE. Jonathan's point was that EUROMENE was a broad church ---. He praised (rightly from my limited knowledge) Derek Pheby who I think had the original idea of setting EUROMENE up (I think Derek's retired now). Derek provided data on prevalence for this European Parliament Petition on ME Petition No 0204/2019 [see other thread*] - there are approximately 2 million people in the EU.
*https://www.s4me.info/threads/eu-pe...ding-for-me-research.10363/page-6#post-215132

This statement from the EUROMENE website "The economic burden of the disease across Europe has been estimated as EUR 32 million in 2015" even for a non-economist like me looks crazy. Compare that "estimate" to the ME Action estimate for the US $17-24 BILLION -
Do they actually mean 32 billion euros? That would, I guess, be comparable to the US estimate.

Not sure how much I should say, but currently work is going on to try to organise a meeting with the EU Commission (target date end of January 2020) i.e. regarding the above petition for biomedical research for ME - the EU research budget will be settled by April 2020, so time is short. Representatives from EUROMENE will participate/lead at the meeting with the Commission. @Jonathan Edwards
@EspeMor ME Action are supporting this petition.

Anyone who can assist please get in touch. E.g. we're looking to find interested MEPs - I'm in the UK (Belfast) and unfortunately UK MEPs may not be "available" even by end of January 2020! So I think MEPs from other countries are "preferred".

The key decision makers are the Commissioner Mariya Gabriel - her responsibilities include research - "Horizon Europe" (funding for research!) and the EU Parliamentary Committee which "scrutinises" Commissioner Gabriel's proposals - Committee on Industry, Research and Energy (ITRE). ITRE seems to be dominated by industry**.

Commissioner Gabriel is from Bulgaria - anyone got contacts in Bulgaria/Eastern Europe?
Anyone got contacts (know MEP/s etc.) on the Committee on Industry, Research and Energy (ITRE)?

Everyone - I find your posts on this site useful - I occasionally look at them to try to get views/benchmark research etc.

Excuse the random thoughts!

*Here's a post I did on the #MEAction European Union (EU) Facebook page:
"E.g. if Commissioner Gabriel decides to fund research on ME (and similar diseases) then there's less for the Industry!
Check out the EU Parliamentary question on ME they told us they were funding "GutMagnific™, a probiotic" [https://www.europarl.europa.eu/doceo/document/E-9-2019-002599-ASW_EN.html]. So they're funding a commercial probiotic, with public money, and claiming it will cure ME! Anyone know of someone cured of ME by a probiotic yogurt - me neither. The rest of the answer from the Commission was crap too".

@Andy @Michiel Tack @strategist

 

Can you create a new thread with more information on this? If people are to ask their MEP for help, they need to be able to tell what to do and when and who can answer further questions.