Germany: IQWIG Report to government on ME/CFS - report out now May 2023

Indeed.

I find it even less excusable for a review at this point, with the benefit of these patient surveys of harm - which no matter what they want to claim are the issues with them, are better than 'pondering' and are data, and at least a massive highlight of this being a big and relevant issue underlying this - can ignore doing this.

The drop-out rate on PACE etc bangs anyone who looks at it closely over the head as a huge question of whether the treatment was just used as a filter to gain a 'fitter population' by putting ill people through a treatment the least well could complete. Certainly by this point.

If you have data that explains this as being due to harm then if you want to critique that data then replace it with something more extensive as a check (yellow card, bigger reporting survey - but along the lines of how harms would be collected for any other illness - not with 'tricks' behind it), you don't dismiss it and use old top-of-the-head explanations that explain it less well from the original authors.

Otherwise what is the point of any review or retrospective if you are neither picking up on these things or using data and knowledge that has since been discovered and could aid in explaining these issues. And I think the choice to do both the inclusion of PACE type trials and to not update them with such knowledge now known, if it stands as it does, simply leaves iqwig with no leg to stand on with regards being a proper review if it doesn't update. Particularly when Nice guidelines have pointed all these issues out and they just chose to remove these and not address in any other way - it's pretty astounding.

 

(If someone ever needs it, attached are the revised and submitted notes on PEM in German. I was pretty surprised though on how unprecise (while sounding pretty well) the deepl translation was.)

 

https://twitter.com/user/status/1601143426325659648

"We publish our 100-page statement on the #IQWiG preliminary report on #MECFS.

The central points of criticism include, among others, the
benefit assessment of the activation therapies GET/CBT and the prevalence estimate of ME/CFS.

To the statement
https://www.mecfs.de/stellungnahme-iqwig-vorbericht/"

 

Not keeping up - just checking the purpose of the report --- shocking - even if they'd started with the NICE evidence review they should have arrived at the conclusion that the evidence base was too low quality to support any recommendation re GET (in any form) and CBT.

Anyone figure out if there are vested interests here e.g. those at the NICE review recall comments from (vested) professionals defending their patch/profession/income ----"Yosser" Hughes "gizza job" ("give us [me] a job").

 

Just wondering if there's another way to challenge the IQWiG report - it's prepared for the Federal Ministry of Health* - a Minister isn't bound by a report. OK the Minister has to set out why they do not propose to implement the report --- but the fact that "[post "treatment"] patients in all four groups would have still been ill enough to be on the waiting list for a lung transplant". Doesn't seem to be something the Minister would want all over social media - maybe worth highlighting that to the German charities and their political contacts!
Anyone close to the German ME/CFS charities?

*On behalf of the Federal Ministry of Health (BMG), the Institute for Quality and Efficiency in Health Care (IQWiG) is compiling the current state of scientific knowledge on the disease myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS)."

 

In the submission of the German Association for ME/CFS they write: "In 2021, IQWiG initially published a call for tenders for two experts. The search was for two medical specialists of any specialty with expertise in ME/CFS. This already published call for tenders has been withdrawn. Instead a new call was published. Now only a medical specialist with expertise in ME/CFS and a psychiatrist and a general practitioner, for whom only "knowledge" of ME/CFS was who instead of "expertise" only "knowledge" of ME/CFS is sufficient."

In an FAQ on their website IQWiG writes:
"Why did IQWiG also look for psychiatrists and psychotherapists in its call for tenders?
Patients repeatedly describe very convincingly that they are confronted with psychiatrists or psychotherapists in the course of care (e.g., in the course of assessments) who do not know their illness, minimize it, or consider it to be primarily psychological, for example, depression. For IQWiG, it is important to understand how these difficulties in understanding and comprehension arise and how they could be remedied."

That's not a fair argument. If they really want to understand "these difficulties in understanding" they need to involve patients equally.
Very much exaggerting, but one wouldn't invite a priest to work on a report evaluating abuse in the catholic church - and only involve those affected in very few and selected questions. Maybe it's not about "understanding and comprehension", but about right and wrong.

I don't know about vested interest - but it's definitely a very weird process.

 

they need only to look at the 'research' and assumptions made by psychs to see that they either ignore (or are ignorant of) biomedical research findings or come up with unproven hypotheses (often presented as fact) to explain any physical abnormalities.

 

Theranos executives tell us their technology is working. Skeptics who haven't seen the technology work are saying it probably isn't. This is why we asked Theranos executives to explain to us what the problem is and how well their marvelous technology works.

Basically equivalent. Absurd. Replace with the tobacco industry and it's the exact same. This is insulting in how blatantly corrupt it is.

 

Certainly is when you think that they don't need to be involved in care at all for everyone (goodness knows why we these days are forced to caveat that like no other illness has to 'in case people have something else, which was probably caused by the situational awfulness/dystopia caused by the misinterpretation/misinformation). Then there is the turkeys don't vote for xmas, and the fact that people see what they are functionedly fixed to see.

If you got an electrician in to look at a shower they'd be studying in a different paradigm to a plumber, weird thing is with psych is not all of them are well-placed to not interpret everything into their realm no matter how stretched it might be and maybe that is for 'good intentions' because they assume other things have been looked at first, but it really isn't the right solution to the issue (what it really needs is for medicine in general to pick up where it is somewhere else lacking).

The other issue we are all sadly aware of is their areas very different standards and regulations on research quality - and so not to be stigmatic to mental illness, I doubt that is OK for any condition anyone has either and bad methods for others doesn't mean those saying not only are the methods bad but the treatment is harmful in so many ways have to shut up 'because equality' which feels like how it is sold in backwards words.

Anyway if this is the argument then them being called in to be told of the trickle-down and how they need to update is the important bit, not providing an opportunity/dilemma whether to update or not that really is marking your own homework. I'd equate it more closely to the postmasters case with the computer system being claimed to be perfect at the behest of those running the post office leaving postmasters accused of stealing: and instead of calling in independents that look at the system and legal case choosing to call in those at the top of the post office to do the review of their own 'investigations'?

Putting aside any vested interests even if these individuals could see the wood for the trees on where they'd got the total wrong end of the stick in looking at the problem they work in a profession where that would not be easy for their career given it would switch so much money out of the profession or at least certain areas of it? Is that a fair position to put any individual in?

 

Postcard campaign to IQWIG and the Federal Ministry of Health (which commissioned the report):
"All I want for Christmas is an IQWiG report on ME/CFS without harmful recommendations."

The call is from #MillionsMissing Germany and is supported by ME/CFS patient organisations in Germany, Austria and Switzerland.

- German: https://www.millionsmissing.de/2022/12/14/postkartenaktion-an-das-iqwig-und-bmg/
- Automatic English Translation: https://www-millionsmissing-de.tran..._sl=de&_x_tr_tl=en&_x_tr_hl=de&_x_tr_pto=wapp

https://twitter.com/user/status/1603057077907226626

 

Via email from IQWiG / News on projects, reports and public hearings:


N21-01: Current scientific knowledge on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS)

Processing status: Processing completed

Last update: 19.04.2023

The final report has been sent to the contracting agency and is expected to be published in mid-May.


[Depending on the final report's content that could be either a good date or a very bad date for people busy with ME awareness day/ month]

 

IQWiG just have published their report on ME/CFS.

Press release (German) here.

From the press release / google translate:

"The information from the statements and an update of the literature research have led to changes in two areas in particular:

" On the one hand, the estimate of the number of patients in Germany is now higher than in the previous report .

"On the other hand, in the overall assessment of the advantages and disadvantages of the so-called activation therapy, IQWiG does not provide any indication for [a benefit] anymore, since severe side effects of the therapy cannot be ruled out on the basis of the study data."



On Mastodon:

https://wisskomm.social/@iqwig/110372000839242542


If I undertand correctly, with regards to CBT they seem to have come to similar conclusions as NICE.


Now too unwell to reas and write more -- but want to leave my huge thanks here to everyone who worked on this, especially the patient organizations and all those on the forum who contributed -- inluding all the forum staff for having the forum

 

From the press release:

On the recommendation for CBT:

On the recommendation for GET:

Unfortunately IQWiG also call for more trials of GET:

 

Related 'Health Information' for people with ME/CFS:

https://www.gesundheitsinformation....halomyelitis-chronisches-fatigue-syndrom.html


Google translate link here.

 

So 2 steps forward, 1 step back.

 

This looks a bit similar to the info the CDC provides, especially the part on GET and CBT. Not great but not bad either, probably a significant improvement from having no info or guideline at all?

 

This seems to be the link to the final report:
https://www.iqwig.de/download/n21-01_me-cfs-aktueller-kenntnisstand_abschlussbericht_v1-0.pdf

 

Yes, that's correct.

Also: