The Mightly - How I’m Challenging the Feeling of Another Year Wasted With Chronic Fatigue Syndrome (2019) Jo Moss

https://themighty.com/2019/05/missing-out-life-chronic-fatigue/

 

Brilliant article.. Definitely saving it.

 

Despite all the efforts and despite real (sloooooow) progress in research, it is unequivocal that this has translated into exactly zero progress to patients.

Yet most governments, when asked, lie blatantly and promise that they take it seriously, some of them like in the UK make the double extra deceitful lie that they make it a priority, while doing nothing.

There has been symbolic change, but no actual progress, nothing that reduces the impact and suffering of this disease, even perception has barely changed. And all of this a choice, willful and calculated, although entirely on aggressive ignorance and lies from self-interested ideologues.

Not a single lesson of the AIDS crisis was learned. Those mistakes just go on being repeated, here almost with renewed vigor and certainty. And we're not even alone facing this. Medicine needs serious accountability. Medical care needs to be a protected right, because it as hell isn't for us.

 

@rvallee

Sad to say I think you are very right on with your observations. After one has been at this for a decade, two decades, three decades or more, one gets just a tad jaded. (Sarcasm intended).

We've been in the phase forever where some governments do the CYA, and faced with incontrovertible proof there are
biological underpinnings to this disease, they say things like "We appreciate ME/CFS is a serious disease". It's like saying "Your call is important to us"; subtext just wait until Hell freezes over, and we might get around to doing something for you. Nice replies are meaningless and empty.

 

On another note - yes, governments have lots of money they can invest in research etc. But consider the stalling. Is it worth it to just keep petitioning them to do more? Their movement in our favour is glacial. Well, now with climate change speeding up, perhaps that's not a good metaphor. But you catch my drift.

I fully recognize many in our community are very financially strapped. But could we raise a bit for research. Even a very little per month. There are some with more who could perhaps donate more. Waiting for governments is looking more pointless all the time.

 

It's still worth petitioning governments because it will make future excuses of "we didn't know" completely hollow. They do know, they just don't understand, but they have all the information necessary to make the right decision. Especially with their empty promises of doing something, which governments only make because they are legally obligated to do so.

At some point compensation will be necessary and this will play a huge role in it. The public record of indifference, even obstruction, is damning and growing it only helps us in the long term, even if it does absolutely nothing in the short term. It's also pretty likely that things would actually be worse without consistently raising the issue. Hard to imagine, but it's pretty likely true. Just consider how in the UK the RCGP argued that the NICE guidelines were too much biomedical and not enough psychological.

The only way we could significantly raise funds is by celebrity appeal. That's the only sure way. The AIDS crisis would likely have been left to worsen for several more years without it. It's stupid but there's a huge popularity contest aspect to it all. Otherwise we are doing everything right and will continue at it. Anyway the single biggest factor, technological progress, will continue apace and bring more value out of our tiny funds. But meanwhile growing the record of malpractice and systemic discrimination is just as important to leverage shame once we have a genuine breakthrough.

 

Jo is an inspiration. Featured in the Eastern Daily press this week and postering for next week's 11th Awareness Day. She is doing Suffolk and Norfolk Proud!!

 

Indeed an inspiring article. Don't give up the fight!

@rvallee

I agree, we need to keep petitioning governments. More of what I meant and should have communicated better was the question of whether to continue pinning all our hopes on governments ponying up meaningful research dollars. I belive in being pro-active.

And yes, we need to keep letting them know about many aspects of this nightmare that is ME. Write to your politcial reps, blog, tweet etc. But it does get very frustrating to hear "Your call is important to us...".

I think the community shouldn't just wait for governments to solve this. They haven't done much in decades, except to stall, or impede biomedical understanding of this illness. As for compensation, I think this may be a long way off if ever.

Despite my frustration and disbelief in the system, I will continue to fight in whatever way I can. We are all doing that!