Publications that show ME is biological

I know this must have been rised several times. But I simply can't find or remember.

Regularly authorities say ME is psychological. Is there a list of qualitative publications showing ME is physical-biological vs. no publications showing ME is psychological? Or differently: If I wanted to proof this statement

to others, especially authorities, how could I do it?
(Statement taken from https://www.s4me.info/threads/royal-liverpool-and-broadgreen-university-hospitals-nhs-trust.4228/)

Is there some kind of summary? Would the IOM report be suitable?

 

IOM report is probably the best for this purpose. Can't be easily dismissed and is very clear about this.

 

Hi @Inara
Would this be useful?

http://www.meaction.net/wp-content/uploads/2015/05/ME2FCFS-RESEARCH-SUMMARY-Jamie-Seltzer.pdf

 

Thank you, @strategist. I thought about the IOM report but wasn't sure. Would you say it's uncritical?

Thank you, too, @Snowdrop. I remembered this summary by @JamieS, but would it be ok for authorities/officials?

What about https://www.cdc.gov/me-cfs/index.html and https://www.health.ny.gov/diseases/conditions/me-cfs/, too? Or isn't this a good choice?

 

@Inara

I think my answer would be to first ask what the goal is in sharing info. That would then better define what info might be best shared.

 

A summary for friends, family, doctors, stangers...But also for authorities. The IOM report could be better for authorities. No? I would also like to demonstrate to authorities (or even sceptical scientists or friends...) that ME is physical and not psychological.

 

Not thinking very clearly here. So I expect you were suggesting that the studies would prove ME is real in which case the compilation by Jaime is a good one.

So now my Question would be what authorities?

I don't think that most people will bother to take the time to educate themselves using their initial bias that it likely matters little. By there's never any harm in trying.

I wouldn't overlook the possibility that some might be swayed by things that are less science and more emotional too.

It might help just to provide a list of the (now) many institutions that are taking biological ME research seriously.

Hanson at Cornell
Hornig/Lipkin at Columbia
Kormaroff at Harvard
Davis at Stanford
Unutmaz at Jackson Labs
Nacul at London school of Health and Tropical Medicine
Staines at Griffiths University
The Mason Foundation in Australia

I may have missed some.

 

You can also provide the German Health Authorities and others with the Special edition publication of Health Psychology Journal that demolishes PACE along with David Tuller's blogs.

 

Thank you, @Snowdrop. All very helpful!

Since I'm German, I might translate some things wrong.

In Germany, it's seems to be common practice by authorities (health insurance, Work Agency, Pensions agency, other agencies, probably courts) to view ME as psychological, which regularly leads to psychiatric assessments, which often leads to well-known problems with inappropriate treatment. So it's about the claim that ME is primarily psychiatric.

For me it's hard to counter that on the spot, and I thought a summary could be helpful that can be handed in to agencies etc. For friends etc. it could be helpful just to say "there's xyz, just google it". For doctors it could help to have an information leaflet (like that by Jamie).

But for authorities/courts it should have an official character.

I am not sure it would really change something. But who knows?

 

Perfect!

 

It would be quite the effort to translate any of this stuff. My understanding is that many Germans especially professionals have excellent english skills.

 

@Inara

I was thinking too for people who you know you might consider sharing the letter Anne Ortegren wrote before she died. For me it tends to make clear that her struggles with health were not psychological but a very serious physical disease. Just a thought.

I think I'm all thought out now.

Hope you get some good feedback from whatever you choose to do.

 

@Snowdrop mentioned Anne Örtegren, @Anne O. Anne used to make super helpful factsheets (I used to help her). Maybe that could be an idea for you to look into? The documents are all in Swedish, but maybe you could take a look at a few of them (using Google Translate) and use them as inspiration to create your own?

For these factsheets, Anne always focused strictly on the most solid facts and the strongest evidence based scientific findings, always using respected high-quality sources (like for example IOM/NAM, NIH, CDC, WHO, CCC, etc).

Here are a few examples published on RME's website (they keep getting updated, so the version you see when you click the links might not be Anne's original version):

This one is targeted towards doctors:

Utredning och behandling av ME/CFS (diagnosis and treatment)
http://rme.nu/utredning-behandling

These are targeted towards Försäkringskassan (the Swedish Social Insurance Agency):

Kort översikt över kunskapsläget för ME/CFS (short summary, what do we currently know)
http://rme.nu/oversikt

Funktionsnedsättning och prognos vid ME/CFS (functional impairment and prognosis)
http://www.rme.nu/funktionsnedsattning-prognos

Here's an article criticising CBT/GET (lots of excellent links!), that Anne helped create:
http://www.rme.nu/node/72

We also used to collect quotes and facts from major scientific reports and consensus guidelines etc, and saved them as documents ready to use -- for example by attaching to emails such as social security related applications, or when contacting journalists, or sending to a new doctor before the first visit etc. Also, they are super handy to keep as a reference, an easy way to find facts and quotes when you are commenting on posts on social media etc.

For example, one document we made was based on the IOM report, the IACFS/ME Primer and the Candadian Consensus Report. It listed many strong quotes from each report organised below headings such as "Quotes about the nature of the disease and its severity", "Quotes about pacing", "Quotes about retiring the term 'chronic fatigue syndrome'" etc. Also included in the document are full references including links, and a short description of each report.

The idea is for it to be as succinct as possible (short, easy to understand, quick to read) and to always refer to the original sources (the most solid and respected one you can possibly find). As you will notice, there is nothing in the documents linked above that says that they were written by Anne or published by the RME/a patient's organisation.

I hope this helps

ETA: I can PM you the document with the consensus report quotes if you'd like.

 

Another excellent source for you to use as inspiration if you'd like, is the website of Anne Örtegren's (@Anne O) ME/CFS newsletter: mecfsnyheter.se

(There's a link to mecfsnyheter.se at the very bottom of Anne's final letter, the one that @Snowdrop suggested.)

On the front page of the website you'll find links to pdf versions of all the issues she published over the years. They are in Swedish, but lots of quotes and the majority of references are in English.

Also, here's an article she wrote, that sums up a few of the most important facts about ME/CFS:
https://mecfsnyheter.se/om-mecfs/

 

Another favourite of mine is Mary Dimmock's (@Medfeb) book 30 Years of Disdain. I think it's absolutely fantastic and well worth a read Actually I'd say a 'must read' There are two versions, the shorter summary version is probably also a bit too long for a casual reader, but if there's something in particular that you want them to know, you could always tell them exactly what (few) pages/chapters to read, if not the whole book. Just like Anne's documents, there are plenty of solid references throughout.

 

It may be harder to find because its not a common question, who would ask if Cancer is biological?
That said here is a good one:


Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approch to diagnosis and management by clinicians
Alison C. Bested and Lynn M. Marshall

http://www.me-ireland.com/Review.pdf

 

Thank you so much @Snowdrop @mango @Alvin! That is so much, it is great. I am certain that will help a lot!

 

I understand the desire to show ME is biological but I think this approach may backfire.

At present we have no quality publications that demonstrate that ME is 'biological' in the sense I think you mean. There may be 10,000 papers discussing findings that might suggest there are biological abnormalities in ME but none of them is conclusive.

The evidence for ME being biological comes from the fact that people are genuinely disabled, not from any science.

The problem with trying to convince authorities or doctors that ME is biological on the basis of scientific papers is that they can easily see through that. If I was the doctor I would look at the papers and say to myself - this proves nothing. This approach has been used in the UK in the past a lot and it has worn thin.

The criticism of psychotherapy studies in J Health Psychology and David Tuller's blogs is a criticism of methods of testing treatments. It is a quite different issue from what theory of the disease is valid. Nothing in the JHP journal provides evidence for ME being biological.

 

As I understand it, the claim by the BPS mob has never been that MECFS is a genuine psychological illness - not in the sense that say, depression or anxiety are. The claim was that people imagine they have a disease when they actually don't.

So what you're actually looking for is evidence that MECFS is more than just imagining you have a disease when you don't.

Its kind of nice to put it that way, because it makes you realise the burden of proof is really on them to demonstrate there is some validity to that ridiculous position, maybe through interventions designed to show people they aren't really sick.

Oh wait, that's what they tried to do with the PACE trial...

So no, not much support for the "I just think I'm sick and need to be shown otherwise" position.

Sorry to be off topic, @Inara, but I needed to say that. The BPSers have hid behind the "fear of psychological stigma" defense way too long, and need to be called out on it at every opportunity.

 

The only way to prove that patients have learned to be ill even in absence of biological disruption is by proving that they can unlearn their illness.

The implications of PACE are that even in a broadly defined CFS/FM cohort, there is little to no room for unlearning.

Meanwhile in Australia, someone thinks that maybe by giving patients an Xbox and active videogames they will finally unlearn their illness...