WHAT ARE HUGO'S DIAGNOSES?
Hugo has been diagnosed with:
• very severe ME (Myalgic Encephalomyelitis) + PEM (post-exertional malaise)
diagnosed by specialized cardiologist (NL)
Click here for more information about these (comorbid) conditions or go to this page.
WHY IS HUGO LAYING IN A DARKENED ROOM?
Hugo is laying in a darkened room on doctor's advice. He cannot tolerate light, sound, or other input due to overstimulation of the dysregulated nervous system.
Misleadingly the ramp-up in symptoms is often delayed, and kicks in one or two days after the “activity’ but then can last weeks of even months.
WHY IS HUGO BEING THROWN OUT OF HIS HOUSE?
Hugo his former apartment, a 15m2 studio on the 4th floor, in the busy city of Amsterdam, could not facilitate the urgently needed 24-hour care. This was late 2018, while rejection after rejection for admissions at care- and treatment institutions kept on coming in. In order to provide Hugo with the care he already desperately needed back then, Lisa urgently had to organize another place to stay for Hugo.
As there was nowhere to go and Hugo his health was quickly deteriorating, Lisa’s mother literally offered her bed and bedroom to Hugo in these times of need. She could no longer face this state of emergency without offering her help and safe home. This was possible due to her giving almost fulltime care to both her demented and dying parents, which meant she wasn’t home very often.
This rental apartment is situated in a flat. After the housing corporation received a report from one of the other apartment’s occupants about the care situation, the company decided to terminate the contract and to reclaim their house, with the explanation that Lisa’s mother (as main occupant) must be present in the apartment for more than 4 days a week. Next to that, because it is a senior-living apartment (55+), no young people are allowed to live here (as far as Hugo is really ‘living’).
The fact that Hugo is severely ill, is not accepted as an excuse, nor the fact that it’s a temporary emergency situation in order to save a life. A clear and official statement by Hugo’s medical specialist that indicated that moving Hugo to another (care) environment and the act of moving houses in general will have serious consequences for his already worrying state of health, are being ignored.
This means that not only Lisa’s mother lost her house after selflessly helping someone in need, but also that Hugo will be thrown out on the streets on the 1st of November. Despite everything we’ve tried, there is still no solution found and we don’t know where to go. While being in a safe and quiet home and receiving fulltime home-care is of vital importance.
It is a very tough situation in which regulations are given priority and empathy is lost, with far-reaching and lasting consequences for Hugo and everyone involved.
WHY ISN'T HUGO BEING HOSPITALIZED OR STAYING IN A CARE FACILITY?
This is a question that many ask. This is completely understandable, the answer is complex. The (Dutch) healthcare system works, but certainly not for everyone.
- For a long time (1.5 years) we - Hugo, his caregiver and his doctors - have been convinced that in this condition Hugo belongs in a hospital or care institution with 24-hour care available. We have tried everything within our power (with help of those working within the health care system) and have faced countless closed doors. We have been endlessly sent back and forth, where everyone involved (from doctors, to mediators, to the secretariat) indicated that Hugo indeed needed help urgently, but that they could not offer that help.
Despite the fact that Hugo’s specific care-needs are overlapping with the care provided on the IC (constant heartrate and saturation monitoring, as confirmed by his GP), the internists at the hospital did not see an indication for further examination and admission, due to the chronic nature of Hugo’s case. They indicated that Hugo has a "care problem" and that Hugo’s disease profile and symptoms are "not described in their study books." In short: what they see is too complicated. Hugo's illness does not fit within the existing protocols, so they do not know what to do with him. In addition, staying in a hospital is very expensive for health insurers and the standard policy is to bring patients back to their own environment as quickly as possible.
After we had gone through long and stressful admission processes at various treatment centers and care institutions (claiming ‘to be the best’ or ‘to handle complex cases’), we were told that they could not meet the intensity of Hugo’s care-needs due to his severe somatic symptoms and limitations. As an interim and temporary solution, it was arranged that the ‘crisis team’ would provide service at home. On their turn they could not do anything for Hugo, because (again) of the chronic nature and complexity of Hugo’s case, and couldn’t do anything else than to refer Hugo (again) to the same (care)institutions that had already rejected him. I can continue for a while like this, about how Hugo was sent endlessly back and forth, without adequate help and with further deterioration as a result.
Rejection after rejection came in, because Hugo's case was found to be too complex, or it was said that care could only be provided if there was a "solid care framework": while the lack of this framework is precisely the reason for our applications! A head practisioner of a care and treatment institution especially for complex cases literally stated: “The case is clearly too complex, I have never experienced this before. This is bizarre."
Unfortunately, many M.E. patients worldwide recognize this state of affairs and poor circumstances. Despite having an officially recognized and registered disease (ME has been recognized by the World Health Organisation (WHO) as a neurological disease since 1969) and you’re officially diagnosed within regular medicine, as an M.E. patient you fall outside the usual boxes and therefore constantly fall through the cracks of the system. Its controversial nature and the stigmatization continue to cause immense patient suffering and distress.
In the meantime, three different and very experienced GP’s and many medical specialists have been involved in this process, and all admitted to not have a clue what to do and how to navigate through these gaps within the system. Again: everything has been tried. Even the GP who literally tried to force hospitalization could not believe his eyes and ears when Hugo had been sent home again in a very rude way after a long day in the hospital. He also experienced to be moving from closed door to closed door and acknowledged that the Dutch health care system is not made for this type of cases. "It seems like we are losing the game and getting defeated by the laws of the health care system." was his conclusion.
- Over the years and due to the lack of adequate care and treatment, Hugo's condition deteriorated further. At this point Hugo is too sick to be admitted to a hospital, treatment center or care institution. This has been found to be difficult to understand for people without experience and knowledge of M.E.. After all, it seems like a contradiction: those places exist for the sake of people that are sick, and those who are in need of care. Aren’t these places meant for them?
Besides the fact that Hugo is rejected everywhere within the current range of offered care and he does not fit anywhere, it is also needed to have a certain capacity in order to stay in such a place. And this is precisely the crux: with M.E. and PEM you do not have the capacity and crossing that limit will cause further deterioration. For M.E. / PEM patients, any form of (minimal) physical, cognitive or emotional exertion, will cause a severe worsening of symptoms and reduction in functioning, with flu-like "flare-ups", also called a crash, with very slow and almost zero recovery. This crash often occurs 2-4 days after the exertion.
For M.E. patients, exertion also includes tolerating light, sound, strong smell or touch, but even having eye contact, experiencing emotions and having stress can be triggers for a crash. In this context stress is even, for example, tolerating communication and connection with others, unexpected (sensory) input, and things increasing the feelings of unsafety. From this perspective, staying and receiving care in a place with a changing care team, where many others are residing, including lights, sounds and fitting into a particular day structure, is absolutely intolerable. This leads with no doubt to further deterioration, with one crash following the other.
When a crash is happening (for Hugo almost fulltime), Hugo is not able to do anything, not even speak or communicate. In those moments, when he, for example, can only make known he urgently needs his oxygen mask or he has to urinate, by the movement of his index finger, there must be a person next to him whom he trusts. Someone who knows how to decipher his code language. For that reason, the care needs to be extremely tailored to his needs, which is dependent on and constantly fluctuating in relation to the degree of PEM and the crash. These are needs and requirements that healthcare institutions cannot meet.
All patients like Hugo, with M.E., chronic Lyme and other misunderstood and chronic diseases need very specific, coordinated and tailor-made care. Care that continuously responds to what is needed in the moment. Patients often stay (at their parents') home in a quiet, dark room, in a safe environment. There are no suitable protocols for cases like this, so there is no suitable institutional care. They are at the mercy of the care of family or friends. This is heavy 24-hour (informal) care. A form of care that becomes even more heavy because this ‘category’ is not heard and seen anywhere.
Hugo is not alone in this. Many painful and humiliating situations take place behind closed doors in our developed and civilized country.
We have noticed that people who get involved in Hugo's process and want to help, tend to make a case for a bed in the hospital or a care institution and to force admission. This is understandable, and something (when this was still possible and desirable for Hugo) tried in every way possible. But at this point it will not help Hugo and is therefore it is not wanted, desired and helpful. In addition to that, it is also a denial of both all paths that have already been explored and tried intensively and Hugo's diagnose and associated needs and circumstances. This does not change the fact that there is extreme outrage about the state of affairs within the (Dutch) healthcare system and its impact on patients.
Hugo’s current medical specialist (cardiologist, with specialization in M.E.) has given urgent treatment advice for STABILIZATION: complete bed rest in a darkened and noise-free room, in a safe and quite environment where it is input/stress-free, with 24/7 (both informal and professional) home care.
WHAT HAS HAPPENED WITH HUGO'S PARENTS?
Hugo grew up without any siblings and with both parents that were long-term ill. Hugo’s dad got diagnosed with a brain tumor when Hugo was at the age of 3. There were just a few months left, the doctors said. Hugo’s dad fought his way through life, slowly deteriorating, losing his functions bit by bit and finally passed away when Hugo was 15.
A few years before, when Hugo was around 12 years old, his mom had been starting to show signs of illness. After a cruel and long deterioration process (with very traumatic experiences you shouldn’t experience as a son and young adult) she eventually died when Hugo was 24 years old. A few years after Hugo’s symptoms first showed.
WHY ISN'T THERE FINANCIAL SUPPORT FROM THE GOVERNMENT?
This is a question we ask ourselves a lot too. Almost every country has official protocols and financial support programs from the government to support those in need. In The Netherlands that’s the CIZ (a.o). This is the main Dutch care assessment center/umbrella organization (for long time care) that’s responsible for an indication of the needed care, which in turn determines the kind of financial support you will receive in order to buy care.
Currently we are, together with a specialized lawyer, in an objection procedure against the CIZ. Their indication? Hugo is granted 0 hours of care.
But, let me start at the beginning. The system is kind of complex, and there are different ways to receive financial support (called a PGB) in order to buy the care you need, depending on your situation. Next to the CIZ for long-time care (government) it is up to the municipality where you are registered (and thus officially live, for Hugo that’s Amsterdam) to financially assist their residents in times of need (with a WMO). The registration procedures are complicated and cost a lot of time and energy.
Knowing Hugo his case is complex and we have faced many obstructions already, we hired a professional whose job it is to take over all kind of practical jobs from patient and caregiver (in Dutch we call them a mantelzorgmakelaar). They officially studied for this and are fully up to date on all laws, rules and applications processes. This lady, very well known in her field and extremely experienced, aborted the process half way as she knew from her experience that Hugo, due to the complexity of his case, the (by then) lack of adequate diagnosis, Hugo’s unstable care frame-work, and without hope for appropriate future treatment or admission (which is a requirement), did not stand a chance. Also, due to his condition already back then, Hugo himself was unable to have the obligatory conversations at his home. They were a requirement.
Two other professionals followed, they also both dropped the case prematurely and did not see any opening to help.
In the meantime, Hugo’s health situation quickly spiraled down. His Amsterdam-based studio couldn’t facilitate the fulltime care and the whole situation became untenable. There was no other choice than to move Hugo to another apartment in order to receive the needed care. As this was supposed to be temporarily, and Hugo was staying in an apartment where he could not officially register, he officially is still a Amsterdam-based citizen. Besides the fact that with a health- and 24/7 care situation like Hugo’s, a WMO is not sufficient at all – being forced to temporarily move to another town and change municipality made the process even more difficult. They could not help anymore.
People in need of long-term and fulltime care have to go to the CIZ. And so we did, several months ago, as Hugo became more and more care dependent and Lisa was giving care 24 hours every day of every week, with no time or possibility of generating any income.
It was an intensive process for both Hugo and Lisa, while there was actually no space, energy and time for it due to the crisis taking place. The whole process had a great impact on Hugo, who also had to be involved, while he was already living a darkened room 24/7 and had to stay away from input and stress. The whole process caused further deterioration and triggered crash after crash.
It is too sad to say that what happened next was to be expected (when having M.E.), but still hit like a bomb. A rejection letter arrived. Hugo is granted 0 hours of care (and thus no financial support). They state that his disease profile (neither M.E., nor CCI, nor POTS) does NOT give any somatic reasoning for the fact that Hugo needs 24/7 care and continuous proximity of a caregiver. The reason for this, according to the CIZ, is the result of psychological problems. Following the rules, people with psychological-based health issues are not permitted to receive financial support through the CIZ.
And this shows exactly how harmful it is to both the patient and their environment, when a disease is unknown, dismissed and covered with stigmatization.
Let me share some facts:
- Not only admission to somatic-based treatment/care institutions have been tried, but also pshychosomatic- AND pshychiatric-based treatment/care institutions have rejected Hugo for admission. As I told before, we’ve tried absolutely everything and within that process we did not dismiss the depersonalization and complex developmental trauma Hugo is dealing with. But all rejection statements declared that Hugo his somatic (!) situation and need of physical care is too care-intensive and too complex, and therefor they cannot offer any treatment or care.
- Patients with Myalgic Encephalomyelitis go for years, or even decades, undiagnosed. Many have been accused of malingering, have been diagnosed with conversion disorders (which basically means who the hell knows) or mental disorders, or have otherwise been dismissed by medical professionals. Guidelines are outdated (all the while M.E. has been recognized by the World Health Organisation (WHO) as a neurological disease since 1969) and new guidelines (set by the WHO and other official evidencebased statements and qualified reports) are being ignored. M.E. is one of medicine’s grand mysteries. Its etiology is not known, and patients afflicted are rarely documented to recover from their ailment, although it sure is not impossible.
M.E. is officially a multisystemic somatic disease, often dismissed as psychological, which has serious and harming consequences for those in need. In the past 10 years that Hugo has been ill, he has built up an extremely long list of (both correct and incorrect) diagnoses, because the doctors did not know what was going on. One of those diagnosis, back in 2010, has been ‘undifferentiated somatoform disorder’ – which basically means a person has physical complaints that cannot be attributed to a medical condition. And that’s the thing, people with M.E. hardly have any abnormal outcome of blood or medical tests. On paper, everything seems fine, because the disease and deregulation is happening on much deeper and more complex layers within the system.
This diagnose (undifferentiated somatoform disorder) has been made in 2010 by the SOLK (medically unexplained physical symptoms) department of the hospital. The suspicions of M.E. started a few years ago and the official diagnosis of very severe M.E. was finally been made in March 2019. Hugo’s medical specialist has explicitly stated that this (of course) proves that the earlier diagnoses of, for example, the somatoform disorder are invalid. A lot of M.E. patients get this label during the long process of getting the right diagnose, that doesn’t mean it’s the right diagnose. But once recorded in your files…
- Until 2 years ago, Hugo has been treated by a psychiatrist for around 8 years. This man has literally confessed that Hugo was his most difficult case so far, because only further deterioration took place, whatever treatment he applied. In retrospect, with the diagnosis of M.E. this can be explained quite easily.
Hugo’s psychiatrist his expert opinion, which he has extensively discussed with both Hugo and his GP, is that Hugo has to contend with serious somatic issues and that they should be addressed accordingly. He has referred Hugo to various institutions for somatic treatment and care, knowing the institutions that later on have rejected Hugo because of the severity and complexity of his case.
- The CIZ states that they cannot find any evidence on paper that Hugo is in need of long-term 24-hour care and continuous proximity of a caregiver. With this they not only deny the diagnosis and the officially recognized disease M.E. (and POTS), also their statement is the opposite of the statements from various treatment/care institutions, which rejected Hugo earlier, because of the required long-term and very intensive 24-hour care and the continuous proximity of a specialized caregiver.
Anyone who would take a single look at Hugo sees that this is a ridiculous decision and a ridiculous and contradictory situation, where Hugo (and everyone involved, such as his caregiver) got the short end of the stick, over and over again.
All of these organizations work separately, but when you put everything together you can clearly see how ridiculous these decisions, statements, regulations and laws come together.
The system crashes, while lives are at stake.
WHO IS LISA? WHO IS NATASJA?
WHO IS LISA?
Lisa is a dear friend of Hugo, and currently his fulltime live-in caregiver. She met and started to help Hugo 1,5 years ago, when his situation was deteriorating quickly and Hugo could not be on his own any longer without sufficient care and continuous proximity of someone who can help and take care of him.
Lisa could not face this dire situation with an impending lonely deterioration towards death and - out of pure necessity and due to the lack of available care - put her complete life on hold in order to help and take care of Hugo. This means putting her long-term company on hold, and leaving her home, loved-ones and city behind.
Since then, she has been 24/7 taking care of Hugo (both physical, practical and emotional), while simultaneously researching his case (together with Natasja, see below) in order to help Hugo figure out what the hack was causing this frightening and debilitating deterioration, while simultaneously maintaining contact with doctors, Hugo his network and doing all his administrative tasks, household, etc. (aka managing and maintaining his life as Hugo wasn't and still isn't able to manage this himself).
Lisa is fulltime caregiver, without receiving any form of (financial) reimbursement, since Hugo his own income (social welfare) falls seriously short, and he still does not get any financial help from the government or municipalities (meant for those in need) to be able to buy the care he needs. Because of this Lisa has unwantedly built up a debt.
WHO IS NATASJA?
For a long time already, when he still could, Hugo has been in online contact with two incredible women. I dare to say that without their continuous online support over the past 2 years Hugo wouldn’t be alive today. One of them is Natasja. She has been there for Hugo with both 24/7 emotional and medical online support, when no-one else was.
At the beginning of 2019 Natasja and Hugo first met in real life. Ever since she has been involved offline too. Next to being present 24/7 in a digital way (with Lisa since Hugo cannot be online anymore), she’s taking care of Hugo a few times a month, when Lisa has to leave the house for a few hours.
Natasja has been dealing with severe chronical illness in her own way, for many many years, being long-term ill herself and having a chronical ill child. She not only has become very experienced in this field, but also very well-educated after decades of carving out her own path towards health. She’s been forced to make healthcare a priority in her life and to advocate on behalf of her child. She knows the essential fight to be heard and the drill of being chronically ill.
Despite she’s fulltime trying to manage her own health situation, while simultaneously taking care of her children, she’s there for Hugo to the best of her ability. Day in day out. As a mother herself and with Hugo not having any parents, she’s deeply concerned about Hugo’s destiny and can’t bear to see him left to his fate without having any parents as a safety net.
WHAT ARE HUGO HIS DISEASE SYMPTOMS?
Hugo is continuously dealing with over 50 symptoms. Here is a selection from the list in random order:
- Extreme weakness
- Extreme exhaustion/fatigued (not possible to put in words)
- 0 cognitive capacity
- Extreme brain fog
- Feeling as being in a faltering video game all the time, as if there are constant errors and the pressure/voltage in his head is getting higher and higher.
- Feeling that brain is being eaten alive
- Extreme pressure on head/brain pain
- Altered stage of consciousness (not able to fully ‘be here’ anymore/DMT-like experiences)
- Amnesia (both long term as short term)
- Not able to process information/any form of input
- Heavily overstimulated/overwhelm (all input: light, sound, touch, etc.)
- Extreme hypervigilance
- Voice loss, only able to whisper (since April 2018) - often not able to talk at all (due to ME)
- Continuously soar and painful throat
- Continues and heavy headaches and migraines (cluster migraine)
- Extreme difficulty breathing
- Feeling like laying on trampoline (as everything is constantly moving)
- Loss of strength
- Loss of muscles
- Speech problems & speech/vocabulary confusion
- Waking up with feelings of extreme hang over (doesn’t drink alcohol at all!)
- Trembling neck (head is too heavy, Hugo too weak)
- Body tremors
- Sweats and flushes
- Extreme pains around heart and chest-area / heart-shocks
- Feeling of suffocation
- Loss of hair
- Continuous state of almost fainting
- Uncontrollable body movements
- Not being able to regulate body temperature
- Extremely sensitive for any form treatment and medication, even the mildest forms
- Ear ringing
- Loss of appetite/thirst (too weak to eat)
- Bad vision, difficult to focus
- Heart irregularities
- Joint pains
- Neurological pain, especially in arms (RSI-like)
- Chronic muscle pain and tensed body
- Feelings of a heart attack, especially before bedtime
- Shooting nerve pains
- A lot of throat/nose/ear/sinus problems
- Temporarily loss of feeling in arms
- Motor control problems
- Extreme dry eyes
- Cold hands/cold feet
- Extreme skin burning
WHAT HAPPENED WITH THE PREVIOUS CROWDFUNDING (CHRONIC LYME DISEASE)?
Hugo thought to have found all the answers at the end of 2017 with the diagnosis of late stage chronic lyme disease, and traveled to Germany with the help of a crowdfunding campaign for a bone marrow stemcell surgery. Now this appears to be 'only' a consequence of much larger underlying issues.
The stemcell surgery never took place and had to be aborted prematurely, due to Hugo being in a state too bad and too fragile for further treatment.
The search for answers for his immune problems has continued and Hugo ended up having consultations with Dr. R. Horowitz, MD. Dr. Horowitz is one of the world’s most prominent LLMD’s (Lyme Literate Medical Doctors), as well as one of the founders of the international ILADS guidelines (The International Lyme and Associated Diseases Society). He wrote two best-selling books about treating chronic Lyme disease and co-infections, trained many Lyme-therapists over the world, and treated more than 13,000 Lyme patients. Also is he counselor to the US Congress on how to achieve better healthcare for Lyme-patients.
This doctor has again diagnosed Hugo with Chronic Lyme Disease (MSIDS) and together with Hugo his Dutch LLMD a treatment had started. "Hugo is in a life-threatening situation", is what he said. Hugo's body still appears to be weak and sensitive for any form of treatment (and the additional temporary increase in symptoms) and an opening has not been found yet.Next to Dr. Horowitz, Hugo his German stem cell doctor is still involved in Hugo’s process
To read about what happened after the crowdfunding campaign back in March 2018, please click below to read the updates:
Or click here to go directly to the E-BOOK to read the FULL STORY, including how every euro has been spent over the past 1,5 year.
Although the money couldn’t be used for the stem cell surgery due to Hugo’s fragile state, the collected money literally made it possible to keep Hugo alive AND discover the root cause of his rapidly declining health. The money is literally spent to keep Hugo’s heart beating and to keep him breathing, while investigating further what’s at the core of his deterioration. Without the help and support he wouldn't be with us anymore and while he’s currently worse than ever, these new answers have created new hope and have laid out the direction towards stabilizing Hugo and keeping him with us.
WHY ISN'T THERE A NEW HOME YET?
We've tried to find another home for Hugo. Every day again. But it didn't work out so far, while time is ticking.
Simply said, there is no money. When receiving 24/7 care at home, your house must meet certain requirements: next to a bedroom for Hugo, there need to be a seperate bedroom for the (professional) caregiver, next to a living/kitchen area. This means that Hugo needs a house with at least 3 rooms.
In The Netherlands this quicky costs in between €900 and €1250. That's way more that the welfare Hugo's receiving, on top of that there is food, insurance and many more to pay.
Second of all, urgency requests and priority (for those in medical need) can only be granted in the municipality to which you are already connected. For Hugo this is Amsterdam, but at this moment he is not able to go there:
- the housing market in Amsterdam is one of the, if not the, most expensive and difficult world wide.
And lastly, but certainly not least, roughly 90% of the houses for rent in The Netherlands have an income requirement of roughly 2-4x the rent per month. If you don't meet this requirement, it is almost impossible to qualify as a candidate, even in exceptional cases of this kind (when your life and health are at stake).
Buying a house is absolutely impossible while living on welfare and being long-term ill. Those affected have no chance of a mortgage.
All in all this means that finding a house for Hugo is near impossible.
WHY DOES HUGO NEED LIQUID NUTRITION?
Hugo is currently dependent on liquid nutrition as he is not able to eat solid foods. The main reason for this is that he almost cannot chew and/or swallow and that it costs him his last reserves. In this way eating is depleting him, instead of fueling him with energy. Hugo has been dealing with severe weightloss over the past year. On doctor's advice he switched to liquid food a few months ago to prevent him from even more dangerous situations and further deterioration.
In consultation with the doctor’s it was decided to reject tube feeding through either the nose (because of chronic sinusitis and symptoms centered around the throat) or stomach (because of the needed surgery and anesthesia, which his body cannot cope with at this stage due to the M.E.)
Like many other patients, Hugo is intolerant for the regular medical liquid nutrition, as it is filled with added flavoring or coloring and other non-biological/natural elements. This triggers migraine attacks and costs a lot of extra energy for his gastrointestinals to digest. The particular biological tube/liquid food Hugo is taking right now will be covered by the Dutch insurance per 2020, but must now be paid by the patient him/herself.