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Your silence is killing M.E.

The IT. 

I was about 17 or 18 when I first stepped inside of the IT. The IT was a famous nightclub in the center of Amsterdam. It was kind of like the Dutch equivalent of Studio 54 in Manhattan, New York. Celebrities like for example Madonna would sometimes hang out in the IT after a performance. 

I have no clue how I got in, but what I do remember is that I was stunned by what I saw. On Saturday it was gay night, and to me as a young bloke in the midst of his coming out it was like they invited the whole Elite male model management with the cover models from Men’s Health combined. 

To my great surprise, some of these Spartacus look-alikes would even come up and talk to Mr. skinny mini-me. One thing I can tell you is that this part of my coming out was a lot of fun. I had a lot of fun! 

There was however the flipside to the story. It was around 1996 and during the AIDS crisis. While it was the start of a new era with more effective drugs, people were still becoming ill. People still died of this disease. It was something that was really visible while going out on a night on the town. Some of these gorgeous men would suddenly and rapidly lose all their muscle mass and weight and become very ill. They were scary times, where love or rather sexual love was bound up with death. It was a mixture of fun, pleasure and love ruined by a feeling that you were playing Russian roulette by the possibility of contracting HIV. 


Switzerland. 

In 2007 I suddenly felt unwell. I was sent by my GP to the hospital in Bern, Switzerland where I was living at the moment. The internist also asked for my sexual orientation and once he heard I was gay he ordered an HIV test as well. 

That really freaked me out. At the time I was living together with my partner in a monogamous relationship of about 3 years. We were super close and open about everything so it never really occurred to me that there would’ve maybe been a possibility of him cheating. It was however something that happened to a friend of mine. So what about me? Was the reason that I felt this unwell actually brought about by HIV? 

I had an appointment with the internist a week later but because of the fact that I was so freaked out, I went back to do one of these instant tests a few days later. While awaiting the results in the waiting room, the internist passed by and was surprised to see me sitting there. I explained to him my fears and that I simply just couldn’t really wait any longer. 

He asked me to follow him and he grabbed my file to show me that I was positive for a cytomegaloviral (CMV) infection and that my HIV test was luckily negative. 

I remember that it was a beautiful sunny day that day, and for all I cared it could’ve been raining cats and dogs. I was on cloud nine. I felt like Gene Kelly in Singing in the Rain. 


U=U

From the first time as a teenager I was intimate with someone there has always been the fear of HIV and AIDS. A grueling disease that could result in death. To me there was still so much uncertainty. Could you share a toothbrush with your lover? What about a lip sore, would even a kiss cause an infection? The more I learned the more I understood what was possible and what was not but that fear just never really left me. 

In 2018 the International AIDS Conference was held in Amsterdam. In Medscape there was an article with the title “Undetectable HIV Is Untransmittable and the ‘Risk Is Zero‘”. 

Three large studies of sexual HIV transmission among thousands of couples, one partner of which was living with HIV and the other not, were conducted. In those studies, there was not a single case of sexual transmission of HIV from a virally suppressed person living with HIV to their HIV-negative partner. Not with these heterosexual or male-male couples.

For me it’s still hard to grasp that these days with all the accomplished advances, that having unprotected sex with someone with HIV and who is virally surpressed has zero risk!! Simply mind-boggling amazing!


S
ilence = death. 

The HIV/AIDS community has fought hard to earn these advances that we are now accustomed to, here in the West. 

At the beginning of the crisis there was a certain inaction because of the assumption that only some people got AIDS, and that those people were, unfortunately of little importance. Claims that only gay men, Haitians or Haitian Americans, hemophiliacs, intravenous drug users and sex workers were at risk became the consensus. But eventually, people outside of these “risk groups” also started dying. Obviously that passive assumption in the early days of the HIV/AIDS crisis turned out to be a fatal mistake. 

As a gay man and as a performing artist I’ve always been intrigued and inspired by a group called ACT UP (AIDS Coalition to Unleash Power). 

These people’s lives hung in the balance. Something needed to be done, and while diplomacy and constructive discussions are imperatively of the utmost importance, concerned government agencies and the scientific world failed to respond with the urgency the crisis needed, therefore ACT UP took matters into their own hands. 

They did so in a provocative and theatrical fashion. They made an impact thanks to their actions entailing visually loud protests. Art Should Comfort the Disturbed and Disturb the Comfortable; which was exactly what they managed to achieve. 

From the demonstrations on Wall Street with thousands of sick people laying their bodies down in protest of the high cost of AZT, the first drug approved for people with H.I.V. to the public demonstrations at the National Institutes of Health in chaining themselves to the fence of the the Food and Drug Administration, even the St. Patrick’s Cathedral and scattering the ashes of loved ones on the White House lawn, ACT UP held thousands of demonstrations between 1987 and 1996. Their actions transformed how scientists and politicians responded to the AIDS crisis.


Your silence is killing M.E. 

I was supposed to recover from my CMV infection after a few weeks or even a few months but that never actually happened. A few years later I was finally diagnosed with a condition called Myalgic Encephalomyelitis (ME). 

ME is characterized by a form of exertion intolerance often referred to as post-exertional malaise (PEM). From the moment ME was renamed to chronic fatigue syndrome, psychiatry has had a blast with this disease claiming to be able to cure patients with cognitive behavioural therapy (CBT) and graded exercise therapy (GET). Patients have expressed for decades that these therapies make them worse because of the PEM, and that these claims of curing patients are not justified by the data

Yet because of the label of (chronic) fatigue (syndrome) there has been very little interest in actually tackling or solving this disease. It has therefore been woefully underfunded compared to the disease burden. In many countries federal funding is at the zero mark, partly also because of claims by the CBT/GET proponents that they already had a cure for some patients with “chronic fatigue”. There are no FDA approved treatments. Healthcare professionals are in general not trained to actually treat patients with ME. So patients are left fending for themselves with a severely debilitating disease.

Some people do die from the disease, or the complications of the disease because of the lack of treatment, support and let’s not forget the rather common gaslighting to top it all off. The suicide rates are rather high. Yet to my great surprise the political, scientific and medical world seems to have been in general seemingly unphased by the fact that this has been going on for decades. 

Much like with AIDS, governments and social institutions have largely contributed to making those living with ME invisible. Since ME patients are often too ill to hit the streets to make this community visible, people are using the internet to make their stories heard.

 

 

ACT now! 

As I’ve always admired the advocacy work of ACT UP and the gay community. It came to my great surprise how much pushback the ME community has actually gotten. My personal view is that we patients with ME are sweethearts compared to the members and actions of ACT UP. 

ME patients are often portrayed as anti-science. We are often being told we should be ashamed of ourselves, that we are difficult and militant, but in my opinion it’s often over dramatized in the media by certain social scientists. On top of that these claims were considered grossly exaggerated in a court of law regarding a ‘5 million pound’ worth controversial clinical trial called PACE-trial. Valid criticism on the accepted science of ME by sufferers has often been made to look like personal attacks. 

Larry Kramer, one of the founders of ACT UP just recently passed away. He was considered a “public nuisance”; a man known and almost feared for his public outbursts. Those however were apparently well rehearsed. They were part of a strategy to shock the country into dealing with AIDS as a public-health emergency and were effectively executed

He also became friends with Dr. Anthony S. Fauci, the director of the National Institute of Allergy and Infectious Diseases, not to mention the White House health advisor. They got acquainted with each other after Kramer called Fauci a murderer and an incompetent idiot on the front page of the San Francisco Examiner magazine. 

Kramer might have been considered difficult but he was also clearly loved and respected. Fauci and him ended up becoming close friends because his fight for change with regards to AIDS wasn’t a personal fight with Mr. Fauci. It was an act of love and Fauci clearly understood that.

 

“If you write a calm letter and fax it to nobody, it sinks like a brick in the Hudson.”

– Larry Kramer



Distracting. 

ACT UP protesters have been referred to as “fascist” and ME patients as anti-science and anti-psychiatry. Editors of scientific journals have been awful on the subject of ME. (1.2) They’ve gladly recycled the myth that those of us in scientific opposition to CBT/GET are merely and blatantly militants. An attempt to distract avoiding engaging in a scientific debate by trying to silence the patient community through tone policing and gaslighting.

Certain scientists and clinicians keep promoting harmful CBT and GET. Editors from major scientific journals keep looking away despite concerns raised by their peers (1,2) and the clear shift in science in the recent years. Many governments and social institutions continue to uncritically hobble along with these scientists, yet numerous surveys, several studies and indirect evidence all show that patients do absolutely become (permanently) worse from these treatments. This, tragically, seems to be of very little importance.

The sad truth is that their passivity, stubbornness and the downright lies told by some researchers, are in my opinion, contributing to literally more suffering, death and despair. For them their selective ignorance through ostrich politics might seem like a bliss. But at what cost is it for people living with ME? What are the long-term consequences of their passivity on health care and science as a whole? They have been made well aware of the issues raised by the ME community. So for how much longer will they be able to continue washing their hands as though innocent of any wrongdoing


Longhaulers. 

It took far too long to declare HIV a public health priority, to develop lifesaving drugs and deliver them to those in need of them most. Sadly ME has never been a public health priority and we are now seeing how this passivity towards this disease is biting us all big time in the bud; passivity, that much like in the early days of the HIV/AIDS crisis, proved a fatal mistake. 

With the coronavirus (covid-19) we’re not only seeing long lasting health complaints with those who were hospitalized. However, those who were active and became mildly affected seem to not be able to fully recover; exactly like the case with me and CMV. 

While it’s too early to tell if some of these patients will go on to develop an ME like illness, past epidemics have shown that infectious sequelae could indeed lead to long-lasting health complaints and complications as with the Spanish Flu, SARS, the Swine Flu, the Ebolavirus, the West Nile virus, Epstein–Barr virus, Q-fever, Lyme disease, Giardia lamblia in Norway and the dengue virus. Having some of these linked infections, patients could indeed end up eligible for fitting the less strict criteria of chronic fatigue syndrome. 

So what has been done to prevent this from happening in the future, to really research a condition like ME and to find a cure? After all this passivity and ostrich policy, what do we actually now have to offer to all those covid-19 patients that don’t seem to recover?

 

“- Other Viral infections and other diseases have led to similar ways of symptoms before and conditions that present In similar way, like ME or Chronic Fatigue Syndrome. People with those conditions have long been dismissed. They’ve been told that their diseases aren’t real, that they’re making things up, that their symptoms are all in their head. Research into these conditions have long been underfunded. And as a result, now when we have this pandemic and untold numbers of patients, thousands – maybe tens of thousands – who are presenting with very similar problems we really are still in the dark about how to both prevent these from progressing on to something like ME. And we don’t know ways of treating and helping these patients. And I think that is a wholly preventable tragedy that could have been avoided, had people with similar problems not been kind of gaslight and disbelieved for many decades.”

– Ed Yong

sciencewriter from the Atlantic,

from podcast WBUR 


Changing science.

With covid-19, we now witness the deadly effects of passivity in crises and the after-effects of the decades of political silencing of the ME community. We are however now also slowly seeing that the negative attention that we got is transforming into a positive one. Scientists and clinicians alike are digging into the science and knowledge that the ME community has been building up over the years. 

Fauci himself has also been criticised for the way he has treated ME. So it has come to me as a surprise that he recently openly talked about post-covid syndrome being “highly suggestive” of ME. In Medscape he mentions how this post viral syndrome is “strikingly similar to” ME. This is of course huge that a prominent doctor is talking about a neglected disease like M.E.

Advocacy work with very limited energy resources have resulted in resolutions for more biomedical research into ME being adopted and larger amounts of funding directed into biomedical research. The Netherlands, which was for a long time one of the front runners of the CBT/GET paradigm and also guilty of gaslighting patients to ad nauseum, has with the perseverance of the patient community managed to become a front-runner in moving towards a research program focused solely on biomedical research.

Maybe with the accumulation of all these efforts and events, are we slowly breaking the silence?

 

“It’s extraordinary how many people have a postviral syndrome that’s very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome.

They just don’t get back to normal energy or normal feeling of good health.”

– Dr. Anthony S. Fauci, Medscape 2020


Love and pride. 

I’ve often thought back to that moment when the internist at the hospital opened my file to tell me the results of my HIV test. Since I’ve become ill I’ve had to stop my job as a dancer with immediate effect. I’ve lost about everything that I could have lost due to this disease. The first 6 years I was mostly sofabound but still able to get out a bit and do my thing. The last 7 years, I really became completely house and now bedbound. 

Because of the PEM I live in a darkened sound isolated room with earplugs, construction workers headphones and when needed, additional sunglasses. Any physical, cognitive or mental overexertion can make me more ill. I’m completely isolated from the outside world. 

I’m not a fan of comparing conditions, but talking to some of my friends diagnosed with HIV around the same time that I became ill, aside from the enormous stigma that still plagues both HIV and ME, I think we all agree that they have been able to continue their lives with some degree of normality. They’ve continued working, dancing, choreographing, traveling. Mine just stopped from one day to the other and it has gone downhill ever since. 

At this point, in 2020, where treatments are readily available in the Netherlands. This is provided of course one responds well to these HIV treatments. HIV has become more manageable to both treat and live with compared to ME. Considering the fear I’ve always had of HIV, that conclusion is a real shocker to me.


ACT UP NOW! 

The fact that the science with regards to HIV has progressed this far is due to the courage of the very brave patient community and of course, also by a group like ACT UP. Their courage didn’t just end a plague; it revolutionized medicine. 

#MILLIONSMISSING protest The Hague 2016

The drive of the ME community to improve science has led to advances that will for sure aid the understanding of conditions like covid-19. Our fight against flawed (social) science will protect covid-19 patients who might go on to develop an ME like illness. We might not have been able to “end” a plague of the disease itself. We might however have ended the plague of how post-viral conditions are being viewed by the scientific and medical world. So in my opinion we’ve absolutely revolutionized medicine in our own right. 

I didn’t really expect that I would have to resort to some sort of activism. The gay community fought hard so that I can now lead a life, reasonably free of being discriminated. The HIV/AIDS community has fought hard to get HIV in the Netherlands to the status of a chronic illness instead of an automatic death sentence. 

So for all the patients, advocates, my friends and allies, for all the politicians, scientists, doctors, psychiatrists and psychologists who have stood by our sides for decades, for all those who recently joined us, I admire your bravery. You really have changed M.E. You’ve empowered M.E. You’ve saved people with M.E. You are saving me! I’m forever grateful and I thank you!!! 

For all those health care professionals, scientists, politicians and government agencies who are aware of the hurt and despair that the health-care system is inflicting on us ME patients, why aren’t you more shocked, horrified and angered by all this avoidable suffering? Why aren’t you more vocal in your criticism of your government? Why aren’t you speaking up?!? What on earth are you waiting for? 

The silence is killing M.E. 

Your silence is killing me. 

Silence = death. 

ACT UP NOW!!! 

 

editor: Russel Mohan

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