Guideline "Tiredness" by DEGAM

Fortunately I don't want / need money from the authorities, or from my health insurance company. If I ever do, I'll get a lawyer set up first before I even apply. If I thought a private doctor had anything useful to offer me I might find the money for one, but so far what I've heard of the private doctors I could go to (reports of people who've been, some of them very enthusiastic) hasn't convinced me. If a real treatment / cure ever does come along that I might have to pay for, I'd hate to have already blown all my money on some self-appointed expert with unproven treatments.

 

Now that I read this thread https://www.s4me.info/index.php?threads/proposed-letter-to-nice.1629/page-3
where Graham and John present their letter to NICE, I wonder if collecting signatures as Graham is doing would be positive?

 

@TiredSam, I absolutely agree with you! Very good decision.

 

I really do wonder how that went down internally. Maybe the psychs put out the papers and an actual doctor/scientist got to handle the letters that were sent to the Kammer...

Yes that is all true, but what I tried to get at was that in reality these documents do not often change the opinions of most doctors. The kind of person who has already decided that anything they do not understand is not real and those who think that the entire psychosomatic hypotheses are a load of horse...manure usually do not change this opinion based on these leaflets - in my limited experience anyway. The first kind is simply too retarded for their actual job and the second type will not suddenly lose 30-50 IQ points from reading that brochure (although a bit of a headache from processing the sheer amount of stupidity would be expected I suppose). The biggest effect, I'd wager, is for insurance in court and expert witnesses, but since as you pointed out those documents are not binding they can be used or discarded at will and a retraction does not mean the entire 'work' of Henning/Nix/etc is not just there anymore if another bullshit source for citations is needed. I'm not saying it does not do anything, but I think we're still kinda fucked in our daily realities even if this gets retracted again.

Do you know anything about them? The https://www.iqwig.de/de/ueber-uns/aufgaben-und-ziele/auftraggeber-und-finanzierung.2951.html page says they only take up work they are handed down by the G-BA (the head of the corrupted hydra) or the BMG (which probably are not much better). Even if they are as objective and independent as they claim to be (which I doubt but I cannot really form an informed opinion here, but the MDK says the same thing about itself when providing 'expert opinions' for insurance and anyone who ever had to deal with them will probably not confirm their version of the story), organizations like this one are vulnerable to 'garbage in, garbage out'-type of mistakes and the blatant misreporting of data in psychiatric trials exploits this to the max. If we had a base of peer reviewed studies that accurately portray how GET sometimes literally paralyzes patients I think we might have an opportunity some time down the road, but most of reality is lost in anecdote so far. Of course, the PLoS-special our friends put together recently is great, but who knows how far in touch with reality the people that get the job to deal with these subject matters are at iqwig, and if they put out something that is as bad for us as the Robert-Koch institute did we would have a document against us with probably more impact than an optional guideline leaflet.

I'm not trying to thwart your enthusiasm, I am just genuinely unsure what the best steps to take are. You seem to be better informed than me though anyway!

 

I don't understand what you mean, sorry Would you explain again?

Hm...Not so wrong....But something must have changed the doctors' views. 20 years ago doctors would laugh at you if you came with psycho stuff. If they couldn't find something they said they can't find the reason and that was it. Today it's quite different. I think that further education might have contributed. But that's not all. There must have been 'advertisement' to advance the psycho beliefs amongst doctors.

Even if I didn't have ME and were pro psycho - reading those leaflets just hurts. A person with decency and value for human beings couldn't accept that stuff.

Theoretically. The court would need other 'expert' opinions. Where do you want to get that from in Germany? There are 2 experts who are willing and able to write about ME. I don't know how long they'll be alive. The court will follow what sounds more 'expertised'.

You are right with this. But look at PACE for a counter-example. People wrote continually against the PACE trial and its authors who denied any communication. With Wessely being the 'head' of it all...Why can't we do the same in Germany?

Not enough. And you mention here an important issue about political structures. I do remember my lawyer said that you can contact them and raise doubt about "medicine quality" in certain fields. New research findings have to be taken into account. Not sure what can be done in that direction. I'll try to check it.

I am pretty sure they're not objective, as the Ärztekammer or the MdK. From MdK and the medicinal service of the Work Agency I know it firsthand.

There's also the Special Issue in the J. of. Psych. Health. That is peer-reviewed, isn't it? I highly doubt the IQWIQ or RKI are up-to-date; they ignore as all the others. Therefore we should get active. I have no problem with going to court, but that's expensive.

I feel the same.

P.S. sorry for grammatical errors. I'm not cognitively fit today.

 

I meant that I would be interested to know why the Ärztekammer NR felt pressured at all and who handled this issue, because I suspect that the people who put out the last document may not have been the same people who gave the order to retract it.


Sure, the overall attitude of the medical field changed over the last decades because the bullshit psycho explanations have not been 'officially retracted' despite being unproven, and thus people from the neighboring fields (i.e. non-psychiatrists) who do not pay attention just assume their colleagues are doing their jobs the best they can and know what they are talking about. But I doubt that single leaflets change the opinion of doctors because, in my experience, actual MDs rarely read those things. I see the problem more in that we have an expression of incompetence that is not attacked from 'within', i.e. not many people outside psychiatry are aware that their colleagues have been slacking off for a century and got paid by insurance to do so.


If we were to do the same in Germany, how would we go about that? I am not aware of any single big study that could be attacked. PACE was an easy target, so to speak, because it wasted 5million++ in taxpayer money and was sufficiently big. If we have to take apart an entire body of work, hacking away at single studies one by one will not be as efficient. If we could create a situation where expert witnesses who deny ME-sufferers the support they are legally obliged to get can easily be sued for violation of §278 StGB and actually make them go to jail over it, this would change a lot. Maybe the SoVD and VdK may be willing to help if they realize just how bad the situation really is, but I have no idea what to do to achieve that...


Oh and don't ever worry about grammar-errors and stuff, we're all brainfogged here

 

I see.
Actually, I don't know. I wondered myself. I guess they might have thought that it's easier to publish "informative leaflets" instead of "mandatory guidelines" which can be attacked legally. And maybe following the motto "Out of sight, out of mind".

 

That's what my GP said, too. Still, he knew all the guidelines I talked about.

Even if some German researchers and people think, German stuff is the best, they are still embedded in the international scientific system. They cite international papers. If an institution cites questionable work, they have to justify. For instance I would like to know how they justify citing the PACE Trial if it was widely shown to be bad scientific practice and if even the CDC distanced itself from it. I also would like to know why the RKI suggests GET and CBT as treatments and at the same time links to CDC who retracted those recommendations.

Here the IQWIQ might come into play who officially has to survey actual reasearch.

I'd like to have an official statement why it can be claimed to cover a wide range of scientific findings if 90% of the references are psychological, ignoring all the bio-medicine publications. Maybe, there lies a possibility to take legal action. I just don't have any idea what else to do. It's obvious nothing will change if we remain nice and pleasing.

If I write to any officials, I would like to underpin my claims scientifically.

That is interesting! I will dig deeper here.

 

I have just checked §278 StGB. Very interesting! Maybe I will ask my lawyer about that. But a feeling tells me it is very hard to prove. It's always hard to prove something was done on purpose.

One thought was we might achieve something if doctors were sued. This could increase frustration on the doctor's side so that they might contact the Ärztekammer who might feel forced to do something. And this would create precedents which don't exist right now. BUT:

• It's highly probable that laws are changed so that it would get legal to mistreat (ME) patients instead of empowering ME patients. (I.e. this could be an own goal.)
• Doctors are "victims" of the system, too - they have to comply or else they're kicked. So, in a way it's mean to attack them legally.
• The government backs up the procedure concerning ME. The ministry of health sees no need of action from their side.
• The chancellor must have heard of ME (an ME patient organization was given an award by her).
• (German) People with ME are not willing to take legal steps. (Costs are a good argument since civil processes can be very expensive.)

Contacting politicians is useless. Several people have tried it.

I think it also would be helpful if people with ME in Germany wouldn't accept a depression/somatoform disorder diagnosis in order to get social benefits. I understand the financial need they're in (I'm too). But nothing will change if psychological diagnoses and treatments are widely accepted. This is a BIG problem. The people I talked with were very clear: "I don't care about the psycho diagnosis as long as I get money. And by the way, I am exhausted." (Me too.)

One consequence: An answer to The Left Party's question about ME in parliament was that only ca. 80 people were getting pensions due to CFS. (The others were "depressed"). Of course, no government will act due to 80 people.

Another: When applying for pensions you are referred to a psychiatrist, as standard. Again, you have to go to court to question that (which I would do). Guess how many people do that. You have the same problem when it comes to rehabilitation (you will end in a psycho clinic by standard - and again, the court; it should be mentioned that there are no ME clinics in Germany, so rehab is senseless).

I wouldn't expect help from VdK. Their first target group seem to be seniors and people in wheelchairs. (I was a member and they let me down when I needed help.) I fear they wouldn't view ME as a disabling disease.

What about the fact that instead of a G-diagnosis you are faced with psychological treatment and "F-re-naming"; there still is a contract between Germany and WHO. (I know this doesn't necessarily mean something.)

But I don't think that going to court is the only and best way.

 

I am brainstorming/thinking out loud now...

The problem is that we are largely invisible to the system.
We need to provide objective evidence of functional impairment and pathology as far as possible. What do we have?
- 2 day CPET (for those who can survive this)
- ARUP labs enterovirus tests (for those who can afford to fly to the US of A and get their blood tested there)
- Is there anything to make the 'cuffing' phenomenon Dr Hyde talks about here visible pre-autopsy in a way that is available?
- How do we prove actual functional impairment of memory, blood flow etc? SPECT etc is not thought of as reliable
- How do we prove this will not respond to CBT/GET or similar techniques (this will be used against us 100%, with the caveat that if you do the therapy and not improve it will be your fault so it is impossible to prove against 'their' rules)

If we just cite opposing schools of thought we will get nowhere in potential court cases because it will be the word of real scientists vs that of BPS shills, so the average judge will view this as something between 'undecided' and 'my employers favour those BPS dudes'.

I hope you cannot extrapolate the not-so-great individual support that the VdK unfortunately is kinda known for oftentimes to their potential willingness to take part in a Musterklage if (but that is a really, really big if) we can actually make them see that we have 200-300k severely sick and neglected patients. But then again, maybe this is just wishful thinking on may part. Actually it probably is.

Does §278 StGB actually need intent or may 'negligence of due diligence' (or whatever an appropriate term would be) be sufficient?

Hmm... hmm.

 

You raise good points, @Philipp. Some we cannot tackle - studies would be needed.

It would be a good start to collect high-quality papers that show a biological genesis in ME.

I don't know this. Do you have a link?

Why is SPECT not looked upon as unreliable?

I had made a PET scan. There it was seen that I have undersupplied and 'oversupplied' regions. Undersupplied was e.g. the hippocampus, and the radiologist said that explains impairment of memory; the oversupplied region means something like 'inflammation'. I also had (have) low function of the thymus.
German doctors ignored that scan because, obviously, they didn't know what to do of it.
The radiologist is said to be one of the better ones. He's old and I don't know how long he will work (or live). It's possible, I guess, to get a report. Would that be helpful, do you think?

Do you mean in general?
How about PACE trial which proved CBT and GET don't work (after clearing the authors' attemps of making the data nicer)?
Don't the CPET results show that exercise is contradicted in ME?
There is also the paper where Gulf War Illness and ME (and controls) were compared with each other after CPET.

On a personal basis, I have my own story; let's see what will happen in court.

Absolutely right.

I cannot say how the VdK is in general. Obviously they helped several people. In those cases I needed help I got nothing. And there were deadlines about which they gave a damn.
In which respect could VdK help our case? Are you a member?

Hm, §278 says "wider besseres Wissen " ( against better knowledge) which includes, in a way, intent, doesn't it? You would have to show a) that the 'expert' had the knowledge, b) that the expert acted against it (probably in order to achieve a certain goal). Hm...
To show a) can be very hard, especially in case of ME. (There is no knowledge about ME.)

I wonder if there's a section about 'non-experts' giving 'expert testimonials', i.e. doctors who don't know ME at all (which can be shown via CV and publications) and who write reports about it. Or if §278 includes this case in a way. Or maybe §277? That happens regularly with the MdK and the 'experts' of the pension fund (DRV) or even with medical officers.

 

Well, for a start we can probably take a look at this document our wonderful JaimeS put together.

From the roadmap document Hip put together: 'ARUP Lab in Utah, USA offers such microneutralization antibody tests for coxsackievirus B and echovirus which cost around $440 each.' As far as I know, these viruses currently are the most likely to be causal for ME (or at least what was formerly called atypical polio and then renamed ME), or at least have the strongest implication of being linked to the illness. High EBV titres and others are less likely to be seen as relevant unless another type of evidence, e.g. immune dysfunction towards the specific virus in question, is provided as well.

From what a friend of mine told me, SPECT is not seen as reliable evidence for dysfunction because it is not known how your SPECT had looked before you acquired said dysfunction. A similar argument could probably be made against the PET scan you mentioned, where without a clear pathology it is not known how meaningful the under&oversupply of the regions in question actually is. I don't know anything about this stuff though. I cannot estimate if the radiologist's report would be useful because I don't know how easily it would be discarded, but then again, if it is not too much trouble to acquire it probably won't hurt...?

I meant pretty much in general, yeah. Like what exactly are the best papers (and so on) to cite. In an ideal world, the Snell et al paper in combination with the actual findings of PACE would possibly be enough, but I doubt it will be that easy in practice if it does not come from a perceived source of authority.

Well, from what I've heard the VdK is pretty hit or miss because how much they help you depends on which person your case is assigned to and how motivated, knowledgeable and overworked they may be. I am not a member, no, but I had an appointment at one of their offices a while back for a free advice session and the guy there mentioned they occasionally do these 'Musterklagen', sometimes in cooperation with the SoVD if I understood him correctly, where they try to tackle a bigger issue via a specific case. If we can get the very top level of those institutions to understand that we are dealing with what I would describe as a benign case of attempted Völkermord, I figure there is a chance they might be interested. But only if we actually have a case, and we are probably a bit early without a validated biomarker and everything.

I guess we need a lawyer here who knows his/her stuff... In normal-people-theory, it should not be possible to be an expert witness for anything unless you know what you are doing, so by definition going against the scientific standard would also have to constitute going against better knowledge. But in legal-territory-reality, this may not mean anything at all. It is always hard to prove intent without basically an whistleblower handing over internal emails of the people in question slurring their victims, but the financial motivation against claimants and for their employer at least should usually be bloody obvious. But then again, bloody obvious to normal people is not the same as readily apparent to a judge who believes e.g. the MdK is objective on or qualified for anything. It may be easier to get 'minor' wins where testimonials get discarded because the expert witness cannot prove he had the necessary qualifications to give an expert opinion in the first place though.

As far as I know, the Charité and Fatigatio have historically been the only places for accredited courses in continuing education and I highly doubt anyone doing paperwork on ME cases has ever even heard of those, so questioning their competence is probably at least possible.

 

Hi @Philipp, again, very good points!

According the PET scan: The same question was raised, how to know if the findings show a pathology. His answer was it also depends on the radiologist's experience. Since he was doing scans of any kind (including SPECT and PET) for decades I'd say he has the expertise. The differences were substantial he said - well...what to say I am not an expert. I daresay he is of the 'school medicine type' (but nice).

I had/have symptoms that fit the findings, that might mean something, too.

You are right - I should get a full report. (If he denies I may know how to judge the findings.)

Later more. Thank you for your thoughts!

 

I heard that, too. But as a member I can't choose the person who is assigned to me. For our purpose, this might be different.

Hm...how to do that?

Maybe a lawyer can be found. I am collecting information.

Do you mean doctors get points for going to their ME seminars?

Now, what can we summarize? Are there concrete steps that can be taken at this point of time?

 

In Tuller's blog, a BMJ guideline is mentioned. Unfortunately, it's behind a paywall. But an "older" version obviously contained this:

http://www.virology.ws/2017/11/13/trial-by-error-the-surprising-new-bmj-best-practice-guide/

But here, he says this has been deleted in a newer version:

http://www.virology.ws/2017/11/15/trial-by-error-whats-going-on-bmj-best-practice/

Can anybody read this leaflet? Could this be used to underpin that CBT/GET aren't helpful?

 

Does anybody know how the process of asking questions to the Bundestag works?

Here (#22),
https://www.s4me.info/threads/uk-house-of-lords-house-of-commons-questions.707/page-2
a question was asked to UK Parliament:

This is a very interesting question. I remember DIE LINKE asked how many applications for pensions were granted to people with ME (ca. 80?). A better question might be, in light of this question, how many applications were refused and how many people applied with ME and were granted pensions with 'depression' or 'somatoform disorder' (possibly after Reha).

Does anybody know?

 

Sorry for not participating more, I've been pretty non-functional the last couple of weeks. You know how it is sometimes

I don't really know how the system for continuing education works for medical professionals and what the requirements are (i.e. how much they have to do and how any scoring systems work and yadayada). I brought it up because it is a requirement for expert witnesses to be up-to-date on the cases they want to advise on, so of anyone who didn't go there in the last couple of years it can be doubted that they fulfill the legal requirements to be an expert. Unfortunately, there are the loopholes that one can always say it is not proven that a patient has ME since this is not provable and therefore a non-entity, and as far as I understand it the part in the law that refers to what is needed to advise on cases is much more open to interpretation than we would maybe like. In fact, I haven't even found anything tangible and the only thing that is referenced occasionally is an essay from some prof. Förster from 1992 which probably isn't even worth digging up.

Concrete step might be to ask the people from the German Association for ME/CFS to try to start lobbying the VdK/SoVD at the right time in the right manner, but this is a longshot and should probably done by professionals or people with a lot of experience on how to do this as we would essentially be asking for a lot of money and commitment. A big issue with this is that the actual legal case we are fighting for is not as simple as trying to overturn a single rule that may be unconstitutional (i.e. nicht-paritätische Krankenkassenfinanzierung where the employees had to start paying more for their insurance), but 200k single cases of systematical abuse of different kinds that may be somewhat hard to prove and where it is not all that easy to even know whom you are suing for what to begin with.
So it is probably not quite the right timing to go ahead now, I assume we still need to gain a bit more traction.

As far as I know the 'kleine Anfrage' (small petition? not sure how to translate this one properly... ) is something the Opposition can do whenever they want, but it historically has been utterly useless since while the Bundesregierung has to respond, if they respond with non-answers (as they have done repeatedly in the past) there is absolutely nothing that happens apart from maybe losing them votes at the next election. Probably a waste of time unless we want to build a repository of historical governmental failures for which they are essentially unaccountable, and right now with the retard-Nazi-party possibly being the biggest party in the Opposition soon we may be out of luck anyway.

Praying for a big Paradise/Panama-Papers type whistleblowing event that would enable us to prove intent on whoever is responsible for this whole mess is what I'm opting for currently, but that may just be because I cannot do too much else right now

 

As far as I know the BMJ leaflet and its parts about missing evidence for GET and CBT were included in the letters of the German Association to DEGAM - as was all scientific evidence. They're still trying to get the guideline tiredness corrected (as the only one of the three German charities).
I'd recommend to support a charity and to work on this together, as the process excludes private individuals (I believe you need to be a stakeholder to have a voice, also for the application to DIMDI that comes in the next month).

(Edited)

 

Absolutely! That's why it took me a while to answer myself. It needs thinking.

 

Thanks @Joh for yet again already fighting all the good fights while we're still wasting time brainstorming about how to properly philosophize about fighting in general!

Good to hear we finally have a patient organization that is effective.