Will we ever get an apology ?

[Quilp]

I know that an apology is not what we all really want. But will the NIH ever say sorry to us ? Will the GP that said I was suffering from hysterical overload ever say sorry ? All those that said this illness was in my head, not real, a way to escape from the world around me.
I am suffering right now. I am desperately waiting for the NIH study to be published - almost eight years later. How in any universe can that be acceptable ? Who is accountable ? No-one ?
Will the ME charities ever fight on our behalf ? Why aren't they screaming at the NIH, or the MRC here in the UK ?
I know this will attract a lot of criticism in my direction - so be it, I really don't care anymore, because it seems to me an awful lot of people have comfortable careers, nice salaries, and easy lives, with little incentive to help us.
They have done nothing for me in almost twenty nine years. Nothing.
The NIH report will most likely conclude that an antigen ( virus ) is attacking our immune system and this is why we are unwell. Really, after all these years they have arrived at something people like Harvey Alter were telling them decades ago.
Sad, really sad. In all honesty I have an overwhelming sense of anger towards these people.
Can you believe Long Covid drug trials began all over the world within three years and yet here we are almost seventy years later. How can that be right ? How can that be morally defensible ? Why ?
Why will people like Wessely never be held to account ? Why ? Why do we have to suffer so much ? Why do so few get to decide the fate of so many without any accountability ? How many more suicides ? And you read about them and then go straight to lunch. Humans - has there ever been a more evil species than us to have lived and breathed on this planet.

 

[sunshine44]

Thank you for your voice.

You aren’t alone.

I share similar thoughts.

I am coming to terms with I don’t think we are going to get an apology. And, that this illness has turned everything I thought out medical system was…. On its head for me. Because medical institutions don’t let people suffer to this degree and gaslight and even let people die. And there is no accountability.

So, for me, I have come to terms with, things are not as they seem. Because this isn’t just ‘how things work’ anymore or ‘these things take awhile’. No, there are cincuous choices being made to prolong suffering in the me cfs community.

The gaslighting is extraordinary. Why are we THIS many years in and doctors have yet to be trained in medical school that we even exist. And given the proper testing, it can easily be seen we aren’t making this up.

Anyways, now I’m ranting and raving on your rant right now 😂

The way forward is going to be interesting. Because the top is broken. So, I feel our community needs to brainstorm for how we pave a pathway when the top sector is broken for reasons we are all still trying to understand and figure out. Many different opinions.

I will add this as well. BP had a huge chemicsl air spill that covered 4 counties where I live past summer. It was a big deal. 2 very toxic chemicals. People got sick. I did as well. Some people needed hospitalizations etc. BP works in tandem with the big Chicago newspapers. That’s known. Not surprised that they mostly did as told and helped cover it up. But the surprising part is a local charity (very popular) specifically DESIGNED to help stop and bring awareness to BPs antics….. went silent. And this was their moment. They did not one thing. Because they are now being funded and supported BY BP it turns out. So their pretty little art festivals and children’s coloring corners of greenwashing people into thinking they are doing good supporting this organization for the environment …. Is yet another infiltrated organization. And people are shocked on social media. How did they remain silent. How did they do nothing when 911 was temporarily shut down from amount of calls. These are hard questions we face as a human species.

I’m not saying me cfs is the exact same. But there has been a concentrated effort to silence us. So what’s next, we don’t even have basic guidelines for ers to follow yet. I am transported by ambulance to and fro since 2019 now and most emt are not familiar with dysautonomia. Most er drs have heard of pots but don’t realize there is a lot more than pots yet. What I’m dealing with is beyond pots. Where is the education? The awareness?

I whole page newspaper article was done on me in 2020 and they called last year to do an update. I said can we please talk about me cfs and dysautonomia and it’s growing prevalence with covid etc. We need to all unite. No. They only wanted my drama. That was it. They had no interest in actually helping me to use my voice and story to get awareness out there. So, I declined a second interview with them.

I don’t know.
But, I know that something is very broken.

 

[linusbert]

no they will not. modern doctors got a license to kill and still say afterwards they did everything correct (according to protocol)

 

[Rufous McKinney]

Because the top is broken. So, I feel our community needs to brainstorm for how we pave a pathway when the top sector is broken for reasons we are all still trying to understand and figure out. Many different opinions.

agree

we have to solve it.

I don’t think we are going to get an apology

we are worse than toddlers.

To grow up is to realize you made a mistake, and learn from it and admit it. Face it. Stare at it. Tell others about your mistake. Urge them to not make the same one.

Anthony Fauci could confess he made a mistake. By confessing, he would do more to help us than any single other action he could take at this stage of his life. To confess, redemption becomes possible.

And what truly amazes me, is the majority of people seem to think they are getting away with all this. As if there will be no reckoning.

 

[Rufous McKinney]

No. They only wanted my drama. That was it.

oh man do I want to swear right now.

 

[Rufous McKinney]

wow I just sort of had an idea. me and my strange ideas.

our state has a Little Hoover Commission. They investigate things/ government related.

But isn't Medicare a government program? Isn't Medicaid administered by states? Aren't states providing services to disabled and chronically ill folks? Aren't doctors licensed to practice in states? Aren't medical schools certified by Something Governmental?

so therefore: how might we get a Little Hoover Commission Investigation...times FIFTY states and at least 140 more countries?

edit: my state is a the fourth largest economy in the world. There has got to be a way.

 

[Rufous McKinney]

I forgot to call the lawyers about the Medicare Advantage Class Action lawsuit. Oh Crap. Add to next week's list of confronting all these things, put off. (somehow)

 

[BrightCandle]

Assuming humanity and civilisation survives all the pressures on it now I think there will be apology but it will be long after we are dead. The ball will start rolling once a diagnostic test is accepted, then definitely with a biomarker and finally when treatments or a cure are found. Once medicine has finally accepted that the families of the victims of this great crime against humanity might finally get an apology from the state, in the same way those who were chemical castrated for being gay were. They got an apology in the past decade for crimes the state committed back in the 1950s.

If we want an "apology" in our lifetimes it will have to come on the end of collective legal action and compensation for malpractice, it will come no other way. First we need that biomarker test and we need to be collecting as much hard evidence now as we can, record every doctor appointment etc just get all the hard evidence because if the time comes we need hard evidence of the abuse.

 

[sunshine44]

wow I just sort of had an idea. me and my strange ideas.

our state has a Little Hoover Commission. They investigate things/ government related.

But isn't Medicare a government program? Isn't Medicaid administered by states? Aren't states providing services to disabled and chronically ill folks? Aren't doctors licensed to practice in states? Aren't medical schools certified by Something Governmental?

so therefore: how might we get a Little Hoover Commission Investigation...times FIFTY states and at least 140 more countries?

edit: my state is a the fourth largest economy in the world. There has got to be a way.

Really interesting.
I am on state Medicaid and have had home healthcare ordered for me THREE times past 6 years. Yet nothing is ever covered. My patient advocate through hospital worker for 9? Months to get a dr to see me at my house but not one would take my insurance. Yet, when you call my insurance it says I have MANY options. They say that not so. The patient advocate eventually told me my case is atrocious and to go to my senators or a newspaper. So I went to a newspaper.

Off record she told me the type of Medicaid I have has not been paying their doctors, no almost no one is taking them anymore.

Anyways, on and on but you bring up a good point.

I like your thinking rufous.

 

[sunshine44]

Assuming humanity and civilisation survives all the pressures on it now I think there will be apology but it will be long after we are dead. The ball will start rolling once a diagnostic test is accepted, then definitely with a biomarker and finally when treatments or a cure are found. Once medicine has finally accepted that the families of the victims of this great crime against humanity might finally get an apology from the state, in the same way those who were chemical castrated for being gay were. They got an apology in the past decade for crimes the state committed back in the 1950s.

If we want an "apology" in our lifetimes it will have to come on the end of collective legal action and compensation for malpractice, it will come no other way. First we need that biomarker test and we need to be collecting as much hard evidence now as we can, record every doctor appointment etc just get all the hard evidence because if the time comes we need hard evidence of the abuse.

Absolutely a huge crime against humanity.

 

[Zebra]

Can you believe Long Covid drug trials began all over the world within three years and yet here we are almost seventy years later. How can that be right ? How can that be morally defensible ? Why ?

100% agree.

I don't quite remember when the Long COVID epidemic began, but I had to stop listening to the news about it because it was making me so bitter, angry, and resentful.

 

[Jyoti]

They did not one thing. Because they are now being funded and supported BY BP it turns out. So their pretty little art festivals and children’s coloring corners of greenwashing people into thinking they are doing good supporting this organization for the environment …

I lived in a city home to Chevron's biggest West Coast refinery and they, like BP, have a lovely little 'non-profit' that puts on wholesome community events, invests heavily in other local charities (the 'good guys', you know?), sends out glossy circulars purporting to be neighborhood news but which are really just Chevron PR. Nothing more than the cost of 'doing business' for them, I suppose. Keep those of us who are downwind lulled while they rake in the bucks.

So...not altogether different, @sunshine44!

how might we get a Little Hoover Commission Investigation...times FIFTY states and at least 140 more countries?

Interesting idea, @Rufous McKinney. I know we face huge barriers to mass action precisely because of the illness we need to act on behalf of. But maybe there are ways we could increase the pressure we place on our public institutions and representatives. Investigations might work. Or.... I have been involved --on another issue of great import to me--in a doable campaign of daily phone calls and emails to Congress, the White House. Organizations in the forefront of this campaign email me easy tools for calling or emailing, a sample script, and then the tool records the call having been made/email sent.

We lobby Congress one or two or three days a year. What if all of us were calling the NIH, the Secretary of Health and Human Services, our Congressional delegation---every day? Of course, as @BrightCandle notes, even with good intentions this sort of progress is slow and we might not see that apology in our lifetimes. But I do think we have been relatively easy to ignore. And it is my guess that drug companies have little interest in us because ..... profiting off of us is a pipe dream. So they--the most powerful lobby on Capitol Hill, I believe---are not advocating for any attention being turned our way.

I have certainly wanted to show up for Millions Missing or to go to talk to Congressional staff on lobbying days, but.....I cannot. I could make a call most days, to encourage my congressional delegation to take up our cause, like Jamie Raskin and Tim Kaine have, to some extent.

In fact, I am now feeling kind of dumb. I can and will start doing this today. I am not going to make a big difference on my own, but there is nothing stopping me from trying.

Can you believe Long Covid drug trials began all over the world within three years and yet here we are almost seventy years later. How can that be right ?

I know. I know. Especially when I am feeling really badly, this makes me crazy. I don't much want to get enraged (doesn't help me feel better) but I can't help it sometimes. Oh, so NOW it is worth studying? Or....my neurologist who is a dysautonomia specialist --stopped taking non-LC patients because there are so many of people with LC he needs to see? What? In other words, had I not been an established patient, I would not have been able to see him because I have been sick so much longer than those with LC-induced dysautonomia? Ultimately I believe that, tragic though it is for the millions with LC, their situation will benefit ours. The initial promise has faded considerably, but I continue to think that the economic impact of LC (sadly, not so much the human suffering) will drive the science. And though we will be an afterthought, I don't care too much if there is are some answers that help.

 

[Gijs]

"'I am desperately waiting for the NIH study to be published - almost eight years later. How in any universe can that be acceptable ? Who is accountable ? No-one ?""

They didn't find anything important. Don't put your money on this study. I am sure we will be disappointed once again.

 

[Alvin2]

No apology will be forthcoming.
They did not apologize to narcolepsy patients or MS patients or all women for "hysteria".

I would use the legal system against unethical practices like the UK psychosomatic brigade if i were a UK citizen.

 

[Dysfunkion]

I don't ever expect one nor do I expect anything to change anytime soon, I have some tests coming up that I hope something shows up on but overall the medical establishment has failed me and is too expensive to continually go to for tests. I just wish for a world where people can get the precise medical care they need without all of this nonsense that should not matter when bringing a person back to health. It's all still so primitive, it feels like no one knows what they're doing and corruption is too rampant. You never know who to trust and if your problems are too complex, they try to just slam you with psychiatric diagnoses and get you out of their hands before you become some kind of problem to them. I work minimum wage, need to live with a family member who isn't safe enough to let in on my struggles, have too many other stressful things to pay for, and I have been in fight or flight survival mode since things got real bad over the Summer. Every day I wake up I'm just like "Not this shit again", it's so exhausting. Not too mention since I'm one of the people with the multiple chemical sensitivity and EMF sensitivity that means I am at risk of being involuntarily committed if I talk to the wrong doctor about it. I'm afraid to even speak up about my own health in an office because what I have going on with my cognitive dysfunction that presents itself in my social expression with my issues paints me as the perfect person to screw over and force on psychiatric meds that will ruin my life forever. It is such an adrenaline pumping, scary existence.

What is worse is I know what to do for myself to make this bearable and perhaps even heal but I lack the resources and money required to do that which would also require me to quit my retail just I feel worse from every shift. I can't get away from a lifestyle that routinely harms my well being over and over again so much that my body can't repair itself from the damage fast enough to get anywhere. I'm stuck in a loop.

 

[SpinachHands]

I completely feel this rage. I haven't been waiting as long as many here have, but I've still felt so hurt as I have learned more and tried more, researched and reached out throughout this year, and being struck every time by how little there is.
When our new GP referred my partner to an ME specialist I remember being so grateful, because she'd actually even heard of ME. Now I look back and kick myself for being so thankful for less than the bare minimum, because that was all she did- told us "Google it while you wait for your appointment". No leaflet, no recommendations, useful links, medicine recommendations, nothing.
Where my partner has been at their worst lately, silently gritting their teeth through pain, trying desperately to hold back tears to not exert themselves more, all they are able to whisper is "nobody is coming....nobody is going to help....nobody cares".
At first I would reassure them that I was going to find help, that I, family and friends, cared. But I understand what they mean now. The doctor they needed, that would diagnose them in time and help them through things, doesn't exist. The treatment they need, medicine that can really make a difference, doesn't exist. The hospital that they desperately need right now, that they could be sure would understand and respect their needs, doesn't exist. We've been abandoned and nobody seems to care or even know. And it makes me furious that we have to be so strong and so brave all on our own, as well as so many others like us right now, and before.

 

[ilivewithcfs]

I feel you. I don't live in your country, but I'm also so mad. Not a single doctor I've been to knows what I'm talking about. Why is it not a part of medical training? CFS is nothing new.