Problems with 'our' M.E. (and CFIDS, ME/CFS) advocacy groups

Unfortunately, while many advocacy groups started out doing excellent work to improve things for M.E. sufferers, today this is no longer true in most cases.

So many of these groups which started out determined to fight against the 'fatigue' and 'CFS' psychobabble, and all the other financially and politically motivated propaganda, and now actively SUPPORTING it.

It is very common to read information produced or supported by these groups which does not contain even a SINGLE facts about M.E., or about anything else. (At best, information on M.E. is mixed in randomly with information on 'CFS' as if they were one and the same).

There are a small number of groups doing some good and worthwhile work for their members. Within that group there are a very small number of groups which really are virtually propaganda free and which do very clearly make the full and proper distinction between M.E. and CFS.

Then there are the worst of the worst, the groups which support all of the worst psychobabble including graded exercise therapy (the most harmful 'treatment' for genuine M.E. there is, and the reason many with M.E. are so severely affected in the first place, or have DIED from M.E.). (These groups are the 'wolves in sheep's clothing'). This includes groups such as: AfME in the UK, the ME/Chronic Fatigue Syndrome Society of Victoria in Australia, and the CFIDS Association of America (CAA), among others.

But the largest number of groups are somewhere in the middle. (These groups are the 'sheep'). They may or may not provide some small percentage of good information occasionally, but unfortunately they combine this with many times more propaganda/fatigue/CFS nonsense, so it's all rather confusing and just pointless in the end, despite any of the good intentions they may have (or claim/seem to have).

But what is so maddening is that these groups are not only not helping people with M.E., they are also harming all those people misdiagnosed with 'CFS' to a similar degree. They help NOBODY.

These comments do not just apply to a few rogue groups, unfortunately. They apply to almost all of them -- all around the world -- and virtually ALL the largest groups in each country. The number of 'advocate' groups -- and individual advocates -- not significantly or overwhelmingly affected is very small.

We must fight to get these groups closed down, or at the very least these groups and individuals must be stopped from incorrectly and misleadingly claiming that they speak for (and provide facts on) authentic Myalgic Encephalomyelitis; as is happening so often now.

These groups must stop hiding behind terms such as 'CFS' and 'ME/CFS' etc. and once and for all state clearly exactly who they are supposedly advocating for. These groups and individuals have caused enough needless extra suffering, abuse, neglect and DEATH. What is happening is a human rights travesty on a massive scale. This has to stop. It has to BE stopped.


For more information on this topic see:

http://www.ahummingbirdsguide.com/topicactivismgroups.htm


For more information on all aspects of M.E. see:

http://www.ahummingbirdsguide.com/whatisme.htm


Acknowledgements: A big thank you to Claire Bassett for all the artwork in this video

Category:

News & Politics

Tags:

• Myalgic
• Encephalomyelitis
• CFS
• CFIDS
• CFS/ME
• ME/CFS
• activism
• advocacy
• severe

[KonaSitkaRose]

Aloha, Jodi,

It is nice to hear your voice after reading so much of your helpful information on your website. Our situation is so tragic, in deed. I feeling like I am dying every day, but keep waking up for more torture. I have lost faith in the medical system as well as so-called support groups who don't have a clue, but ask for money. And I am/was a nurse, now about 95% bedridden. When I do try and get up, it's so awful I can't explain it. Here's to better days for all of us <3

[BondGirl070]

This is so true Jodi. Here in Canada there is just as much ignorance as the rest of the world. No doctors I had seen at first had never heard of M.E. So clearly there is little to no education or the wrong education about M.E. or CFS. I found a good doctor, knows about M.E., finally through the College of Doctors and Physicians, but it's under the terminology of CFS. Unless we all begin to speak up nothing there will be no movement. Thanks for ALL you've done this far!!!

[erin517]

thanks for posting, your right it is a nightmare

[Bluebottle83]

Brilliant video Jodi, thank you for making this important point so forcefully.

The 25% M.E. group that represents those severely affected in the UK must be exempt from your criticism of the larger better funded charities. The 25% group has always worked in it's member's best interests. It is vocal in it's disgust with the incomprehensibly powerful wessleyites and their unscientific 'somatisation' (hysteria) theory of M.E.that is saving the benefits agency and health insurance companies millions

[luminescentfeeling]

Well done Jodi, if only you were healthy. You're an intelligent worthy human trapped in this horrendous politial illness. Tragic, very tragic. Peace. x

[mollyfairy]

you are a powerful force - no question! more power to you : )

[paradisenowlost]

The Pictures help lift my spirits. Thank you

[GBCOne]

You'll have to explain, dgd.

[deadgirldreaming]

Excellent Jodi!

GBCOne - can I ask how this fits with what you say in your WHO's Right Video that seems to say the complete opposite...

Personally I find it difficult to know what to think half the time - there is so much conflicting information around...

[GBCOne]

PWMEs may have naivety but in my decade's experience of dealing with them, I find them very unwilling to rock the boat, generally speaking. PWMEs have to raise their game. What I like about Jodi's videos are that they are cleverer than most, especially visually, and those videos get to the point. There has to be less snobbery, more tenacity, more imagination and a few other things. To a degree, PWMEs get the advocacy groups they deserve. They themselves have to raise the bar. Nobody else will.