Blog: Since Being Diagnosed with Rheumatoid Arthritis, I Always Feel Like I Have the Flu. Here’s What I’ve Learned About Malaise.

https://creakyjoints.org/about-arth...what-malaise-feels-like-rheumatoid-arthritis/

(I had not seen this decription used in relation to RA before. It reads more like an ME patient)

 

I am afraid I think that the author has got the wrong end of a bunch of sticks.
I never met a patient with rheumatoid arthritis who described their problems anything like this. This sounds like a story made of cut and paste out of magazine articles or internet posts.

Malaise is not a cause of anything - it is the name of the effect - feeling awful.

 

https://www.ghlf.org/

This is one of those times when I think it best not to say what I think.

 

An interesting point and yes, there is an awfully commercial feel about the linked material.

 

I can't find who funds them but they are based in the US with organisations they trademark around the world. So could be any number of places including (as an example) Bill and Melinda Gates Foundation and possibly pharmaceutical companies. I add the pharma because they say their management have to sign conflict of interest

They seek to be an umbrella organisation that cover all manner of illnesses and their advocacy.

They look like they provide a lot of info that is quite varied (no one focus; on BPS for example but tele-health seems to be mentioned a number of times)

They say:

"Education and mobilization occurs through partnerships with physician networks, national and state-level professional societies, and a collaborative relationship with other non-profit organizations and patient support groups. This collaborative advocacy allows GHLF to leverage the reach and impact of healthy living messages to effectively overcome barriers to care."

Who they are:

https://www.ghlf.org/about-us/

They are seeking to increase their influence: (this is just one ex from arthritis)

"At the virtual ACR Convergence 2020, the American College of Rheumatology’s annual meeting, CreakyJoints presented data collected during the COVID-19 pandemic that spotlights its impact on people living with chronic rheumatic diseases, reporting in part that many patients stopped their immunosuppressive medications without a recommendation from their doctor. The availability and integration of digital research tools, such as the ArthritisPower Research Registry, combined with access to complementary physician and patient networks, resulted in CreakyJoints presenting more data at ACR Convergence 2020 than at previous annual meetings, with two oral presentations and eight additional poster presentations."

With increased influence comes increased leverage to be the creator of the direction things will take.

 

So maybe this is complementary medicine marketing network?

 

I don't know about the organization but I recognize one of the patients, Tinu, and I doubt she would be involved in dubious stuff, she's a good chronic illness advocate.

 

I would say by my brief look that there is some reasonable looking stuff on there.

I think it's good to be aware of new players in advocacy and to mind and assess what they are doing. There is so little oversight and I have stopped believing in the goodwill of any org until proven otherwise rather than the other way round. I wish it wasn't so.

 

The BPS people have been trying, and succeeding to a large extent, to get other fatiguing illnesses to believe that their fatigue is the same as ME and so it can be cured as proven by the PACE trial.

MS has been conquered and the RA society was funding BPS studies even before them. I don't now if the studies were ever done but it was horrifying when it was mooted.

Before that, I read an article about fatigue in RA and MS being caused by the sheer effort it took to do thingsd with these diseases. The description did not feel like ME at all.

I think the BPS people are busy making PEM mean

which is not what I ever thought PEM was though it is disappointing that so many people who should know better describe it that way. Some of our symptoms may get worse but we actually get different symptoms as well, not to mention the delay in it happening.

This all fits with what has been discussed on different threads; the way patients use the words they are given to fit their symptoms into. The flu like feeling will be from immune activation and is no surprise. Getting sick after doing too much is common in chronic illness. What is bad from our point of view is that it is being made to sound like ME, patients will accept CBT and GET and we will be classed as whiners again.