And we're on for part three of #ME101 !

Part three: science and 'science'

To (re)read part 2: https://twitter.com/ArlettePoolen/status/1335388274379137025?s=19

The science in ME can be divided in two parts: biomedical research and psychological research.
(Sorry that it's this long, I had already written it when I figured 2 threads would be better. But I cant separate them without starting over)
Let's start with the biomedical.

As mentioned in the other threads one of the key symptoms of ME is PEM. If you want to read more about the science of PEM, @MEencyclopedia has a whole page with lots of references.
https://me-pedia.org/wiki/Post-exertional_malaise

One way to 'prove' PEM is with a 2-day cardiopulmonary exercise test. On the second day, ME patients display a significant drop in VO2 max. This is unique to ME and is not seen in (healthy) controls.
Since it can make #pwme worse, it is not wildly used.

The National Academy of Medicine said there is "sufficient evidence that PEM is a primary feature that helps distinguish ME/CFS from other conditions".

Moving on. What have researchers found when they studied #pwme ?
First I have to say: funding for ME has been almost zero. Male pattern baldness has gotten more money than ME. This is a comparison of what ME gets, and what it should get if you compare it to other illnesses:

A lot of amazing work has been (partially) funded by patients. For example work from @OpenMedF

Because there is no commonly used biomarker for ME, lots of people believe there are no biological abnormalities. This is false. There are lots of abnormalities found.

For the people who want to read more, I'll link a few things.
There are cytokines abnormalities https://me-pedia.org/wiki/Cytokine#Chronic_Fatigue_Syndrome
Signs of neuro inflammation https://me-pedia.org/wiki/Neuroinflammation#Possible_neurological_biomarkers_of_ME
There are metabolic features of ME https://me-pedia.org/wiki/Metabolic_features_of_chronic_fatigue_syndrome
And much more

CW: med bs, psychology bs

And now for the psychologists. There are psychologists who don't necessarily believe in ME. They say patients have 'false illness believes', have a 'phobia of exercise' or are just taking on the 'sick role' in order to gain certain benefits.

CW: psychology bs

Some believe patients are just deconditioned and are avoiding activity because they are afraid.

Note: I have nothing against psychologists, and neither do most ME patients. We just don't accept the abuse and mistreatment of our community. While some psychological intervention might help #pwme (for example help w/ accepting), cgt and GET do not help.

CW: PACE trial

They have made therapies designed to get patients back to "normal". One of the most famous studies is the PACE trial. It is a study where they want to determine if cognitive behavioral therapy (cbt) and graded exercise therapy (GET) can help cfs.

GET means that you gradually increase your activity. Cgt is a therapy based on changing unhelpful thoughts. In case of ME this often means 'you can't think about being tired'.

Often cgt and GET are given together. You are taught not to listen to your symptoms and to increase

activity, no matter how you feel.

Since you have PEM when you have ME, this is not possible. You may be able to push through for a while, but eventually you will crash.

Lots of people have gotten worse because of these therapies.

CW: PACE trial.
The PACE trial has lots of criticism for being poorly designed and possibly overstating results.
You can read more about it here: https://me-pedia.org/wiki/PACE_trial 

There have been many attempts to get the raw data from the trial, but the researchers keep refusing.

Remember when I said that in order to get an ME diagnosis you are only able to do 50% or less then you could before you got sick?
This image is an example of what GET researchers thought a normal week for cfs patients could look like:
(Source: https://me-pedia.org/wiki/GETSET_trial )

Another 'therapy' is the Lightning Process. @exceedhergrasp1 wrote a great thread about it https://twitter.com/exceedhergrasp1/status/1334225921704742913?s=19

CW: med abuse, Institutionalization

Because patients aren't believed, lots of really horrible things have happened. Multiple children where taken from their parents and admitted to a mental health facility. The doctors believed the patients had mental health issues and

CW: medical abuse

Their parents were reinforcing it. They made the children do things they weren't able to. There are testimonies of people who were thrown into pools to show them they could be active if they had to (they couldn't). People who's food was placed just out of reach

CW: medical abuse

So if they wanted to eat, they had to push themselves. Also light and sound sensitivities were ignored.

Karina Hansen was taken from her parents and they were not able to see her during that time. You can read about her here: https://me-pedia.org/wiki/Karina_Hansen

Over the last year(s) things have started to change. Multiple major influential organisations (IOM, NICE, dutch Health Council, ...) have removed GET and cgt from their recommended treatments.

Unfortunately there are no current treatments that are commonly used.