#it's the stress making my immune system unable to handle something like a normal flu

[lukemichaelcalumashton]

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[scatterpatter]

Some Covid-19 Vaccine Info: what to expect

So some disclaimers:

I’m only going to talk about vaccination in America- sorry to the rest of the world but I don’t know enough about the vaccination process in other countries to talk about them

I’m not a doctor or nurse or otherwise medical professional, I am however someone who’s related to multiple doctors/nurses, used to work in a nursing home and got vaccinated while working there, am currently working for a company that facilitates clinical trials, and just did my basic online research. If I get something wrong, please correct me!

CW for obvious medical talk, nothing graphic or gore-y though, mentions of needles and whatnot but again nothing bad

Under the cut!

When am I going to get my vaccine?

This will vary state-by-state, check your state’s rules, you’ll likely find what you need by a quick google search(ex. “Vaccination eligibility in [state/county/town]” or something like that)

The most vulnerable are put at highest priority: for example- those 75+, those who work at or live in nursing homes, those who work in hospitals, those who are immunocompromised, etc. After that will be those as somewhat high risk, this will vary state by state but could include: grocery store workers, teachers, and other employees who come in contact with many people for their job, those 50+, etc. After those are vaccinated, it will slowly open to the general public: most likely depending on both your age and where you work/go to school. The less at risk you are for getting/transmitting covid, the longer it will be.

As of this post(March 16, 2021), children are not permitted by the FDA to get the vaccine. Pfizer’s vaccine is approved for ages 16+, while Moderna’s and J&J’s vaccines are permitted for ages 18+. These companies are either planning to or are currently conducting vaccine trials in children, but it’s unknown when the vaccine(or a variant of the vaccine) will be available for children

The Three Vaccines

Pfizer was the first vaccine to be approved and distributed, and some basic info about it:

It comes in a series of two doses, 21 days apart

It’s dosage is 30micrograms of vaccine, and has a 95% efficacy rate(efficacy meaning in a group of people, there’s a 95% reduction of covid-19, more thorough definition here)

Used to need to be stored in -94 degrees Fahrenheit, which required special freezers, but recently, the FDA announced that the vaccine can be shipped and stored (for a two-week period only) at temperatures of normal pharmacy freezers, between -13 and 5 degrees Fahrenheit

After thawing, a vial of the Pfizer vaccine must be used within five days

Because of the above point, you’re more likely to find Pfizer doses in urban and less likely in rural areas due to the storage issues

Moderna was the second vaccine to be approved and distributed, and some basic info about it:

It comes in a series of 2 doses, 28 days apart

It’s dosage is 100 micrograms of vaccine, though hasn’t shown evidence of being any more effective than Pfizer’s vaccine

It has a 94.1% efficacy rate

Moderna’s is stable at fridge temperature for 30 days and at room temperature for 12 hours

Johnson and Johnson(J&J) was the third vaccine to be approved and distributed, and some basic info about it:

It is a one-dose only vaccine

They’re also testing a 2-dose vaccine, though the results from their trials will not be available until most likely May 2021

It has a 66% effective rate against moderate-to-severe symptoms of covid, but is 85% effective against severe disease

Because of this, J&J is working on a booster shot to increase the effectiveness of this vaccine, though its unknown when this booster will be ready(I believe this booster combined with the original is the 2-dose vaccine mentioned above, but don’t hold me to that)

J&J’s vaccine can be stored at room temperature (not to exceed 77 degrees Fahrenheit) for 12 hours when the vial hasn’t yet been punctured. After the first dose is withdrawn, the vial can be stored in a fridge for six hours or at room temperature for two hours.

The above means that this vaccine is encouraged for use in rural communities, where it’s difficult to store vaccines at extremely low temperatures and the travel times between small towns

While Moderna’s and Pfizer’s vaccines came out before many of the variants seen throughout the world, J&J was specifically testing with the variants

How do the vaccines work?

Both Pfizer and Moderna’s vaccines work on what’s known as a messenger RNA vaccine, or mRNA for short. To put it in simple terms, the way it works is as such: a harmless “spike protein” is injected into our bodies, this protein can also be found on covid-19 cells. When our immune system sees this protein, it recognizes it as something foreign that should not be there and starts making antibodies in order to fight off these proteins. Now that there is an immunity built up, whenever a covid-19 cell is now introduced to the body, the body already knows how to fight off the virus. (more detailed explanation here) 

J&J’s vaccine works a bit differently, using what’s known as a Viral Vector Vaccine. How this works is as such: a modified version of a different (and harmless) virus, known as the vector, is introduced into the body. Much like the mRNA vaccine explained above, this cell has the same proteins on the exterior that covid cells have. Your body will build up antibodies to fight off this vector, so that once covid is introduced to your system, your immune system already has the built up defenses to fight it off (more detailed explanation here)

To put it as simply as possible: all 3 vaccines introduce a harmless substance in your body. Your body’s immune system then builds up a defense against this substance, and now that you have a defense built up, your body is now prepared to fight off covid-19 cells.

Do I have a choice on which vaccine I’ll get? Which one should I get if so?

Depending on your area and where you go to get the vaccine, you may not have a choice in which one you get. It’s more likely that you’ll get a Pfizer or Moderna vaccine if you’re in a more urban area, and it’s more likely that you’ll get a Moderna or J&J shot if you’re in a more rural area, but who knows. 

If you do get a choice, however, there’s really no vaccine that’s considered the “best”. Pfizer’s and Moderna’s are so similar that the differences between them are basically pointless. If you have a choice between one of them and the J&J vaccine(or a choice between all 3), then that may make a difference due to J&J’s functioning so differently. Honestly, this will come down to what you think is best for you. Weigh the pros and cons of each, and make a decision on what you feel is the best option for you. It may come down to what supplies a clinic has for a day, I’m not sure, I didn’t get a choice in which vaccine I could get.

I cannot stress enough that none of these are the “wrong” decision if you get the choice. A vaccine is a vaccine at the end of the day.

What is herd immunity?

“Herd Immunity” is the concept that, when a large enough number of a population is immune to a disease, it prevents the disease from being able to spread. If one person gets covid, but everyone around them is immune, the virus will be unable to spread to anyone else. This concept is important because it protects at-risk people who can’t get the vaccine(children, pregnant people, etc). It’s important with dealing with vaccination numbers to remember the following: We don’t need to vaccinate everyone, we just need to vaccinate enough people. (source)

What about those adverse reactions?

There have been a small number of people who, after getting one of the mRNA vaccines(Pfizer and Moderna), have experienced anaphylaxis(a severe, life-threatening allergic reaction). There are 3 important things to keep in mind with this:

Anaphylaxis after COVID-19 vaccination is rare and occurred in approximately 2 to 5 people per million vaccinated in the United States based on events reported to VAERS. This is an extremely low percent.

There are medical professionals on site who are ready to treat someone who goes into anaphylaxis.

There’s no data on the exact numbers, but some of the reports of adverse reactions came from people who had a history of allergic reactions to other vaccines

If you have no history of allergic reactions to vaccines, you should be fine. If you DO have a history of such, consult with your doctor over risks and benefits, and bring an epipen or some other form of treatment in case of an emergency.

What can I expect when I go to get my vaccine?

The registration and check-in process will vary depending on the place you go, so I won’t try to guess what that will be like. As for the administration of the vaccine, it’s very quick and easy. They’ll ask for your arm, and it’s not required but recommended to give your non-dominant arm(since it’ll most likely be sore for a few days). The needle is very small, and only in your arm for about 5 seconds. I get very squeamish around needles, so if I could handle it just fine, so can you. A small bandaid because you might bleed a tiny bit, and you’re good. It’s like most muscle-injected vaccines, very simple and clean.

The CDC recommends that, because of the adverse reactions mentioned above, that you stay at the vaccine site for 15-30 minutes so the medical staff can monitor you. Cases of anaphylaxis occur within 30 minutes, so if you’re one of the extremely rare group who has a reaction, staff will be there to treat you effectively and immediately.

Setting up a second appointment, getting the record of vaccination, etc will vary depending on where you get your vaccine. 

What side effects can I expect afterwards?

Side effects may vary from person, and there are some differences experienced by the different vaccines, but overall you can expect to have flu-like symptoms for a few days. If you’re getting a second dose, your side effects are likely to be worse after your second dose.

It’s a good sign if you’re having side effects! This means that your body is responding to the harmless mRNA or Vector explained above. By fighting these off, you’ll have flu-like symptoms, but in turn your body is building up the right defenses to be able to fight off covid. So don’t panic, side effects right after a vaccine means its working!

Common side effects either reported online or I’ve seen from talking to others who were vaccinated:

Fatigue

Headaches

Muscle soreness on the arm that was injected

Fever

Chills

Nausea

Soreness at the injection site

For the most part: taking it easy, drinking fluids, taking painkillers for any pains, etc should be enough to get you through it.

You may want to see a doctor if:

Your symptoms are getting worse, worringly-so(basically if your symptoms would make you see a doctor if you had the flu)

The redness or tenderness around the injection site gets worse after 24 hours

My personal experience after getting the Pfizer vaccine:

The first dose hit me harder than I expected. I had a light fever(didn’t get an exact temp but I was definitely feeling warm, I was most likely hovering below 100)

My god, was my arm SORE. I even drew a thing here. Definitely hurt to lift for a few days, but painkillers helped

Was more tired than usual for a few days, had trouble staying awake while working from home at my new job

Since the first dose hit me harder than I expected, I thought the second dose would’ve been awful, but it wasn’t as bad as I expected. Worse than the first, but not as bad as I was bracing for

The morning after, I woke up feeling mostly fine, but an hour later my temperature spiked to 100.4 and I felt like I was hit by a truck. I took some acetaminophen(pain killer/fever reducer) and within another hour or two jumped back down to 99.5. Kept that fever for a few days, but it never spiked that high again, so I was fine.

I had “brain fog”, which is pretty common with fevers, which is when you feel somewhat loopy, and have trouble concentrating/speaking/thinking as clearly as usual, since your body is so focused on building its immunity.

How long should I wait before my vaccine is fully effective?

Right now there isn’t enough data to give an accurate timeline on when a vaccine is effective, but it’s recommended to wait 2 weeks until after you get your second dose(or first dose if you got J&J) to consider yourself immune.

It’s important to note that the vaccines are proven effective against symptoms of covid-19, but as of right now, it’s possible that a vaccinated person can still have covid with no symptoms but still transmit the virus to others. One study conducted by the Israeli Health Ministry and Pfizer Inc. found that the vaccine reduced infection, including asymptomatic cases, by 89.4% and in symptomatic cases, by 93.7%(source). So while the evidence suggests this, it’s still important for those who were vaccinated to continue taking preventative measures such as masking up and social distancing.

Some More Sources

I’ve used this data throughout this post, so read up on these, and do your own research! The more informed we are, the better!

CDC Information on vaccination

FDA information on vaccination

Statnews comparison between the 3 vaccines(content warning: picture of a medical needle on the top of the article)

CDC: What to expect after getting a vaccine

TL;DR:

I recommend reading this whole post, but here are some key points in case you can’t:

Pfizer’s and Moderna’s vaccines use the same method and there are very few differences between them

Each vaccine has pros and a couple cons, and you MAY have a choice in which you can get, but each is proven safe and effective against covid-19 in adults 

Expect flu-like symptoms a few days after getting vaccinated: it’s not only normal and expected, but it’s a sign your vaccine is working

[cannabisrefugee-esq]

(via A "Rational Suicide" Note. Ft. Anne Örtegren.)

November 9, 2019

This is a “suicide” note left by a ME/CFS sufferer who sought and found relief from her suffering via legal, medically assisted suicide.  She says this manifesto took her months to write, which I do not doubt a bit: it is long, detailed and polished and was written when she was feeling terrible.  She wrote it with the intent to describe her almost indescribable pain and experience, and to convince others to take action on behalf of ME/CFS sufferers, both of which are lofty communication goals when anyone is seriously ill.

Describing and convincing have been my most impossible endeavors since I’ve been seriously ill myself and I think I have mostly failed, judging by others’ reactions to everything I’ve managed to gather the physical and emotional grit to attempt to communicate: that I am seriously, hopelessly ill with an incurable, progressive disease, that there is no bottom to how bad this can get, and it matters not what anyone thinks about it.  Some things are just true regardless of whether anyone believes it.

In this note, ME/CFS patient Anne Örtegren describes symptoms and dilemmas I have experienced myself and she foresees logical outcomes to her predicament, something sick people and especially sick women are never allowed to do because catastrophization. For example, she knows that her heightened sensitivity to light and sound will make treatment or recovery in a hospital setting impossible where the standard of care in that environment requires constant activity and interruptions, and provides no privacy and no escape from the harsh industrial lighting, interrogations by (allegedly) well meaning staff and the general hustle and bustle of capitalistic money making on the backs and bodies of sick and dying people.

That is but one example of a sick person making informed prognostications regarding likely outcomes of the things other people want to do to us, and as someone who shares these sensitivities to light and sound (and therefore an aversion to hospital settings) as but one example of our shared experience of being seriously ill, I appreciated her spelling it out.  I also feel extremely sad that she had to, and furious that no one who allegedly cared about her wellbeing including medical professionals who should be fucking sensitive to the actual needs of real patients could make the leap themselves.  There are many such examples in this letter.

See for yourselves, and understand that as illuminating and raw as this letter is, it’s also been edited by the publisher and a so-called suicide prevention expert because the bottom line everywhere appears to be that there is no such thing as rational suicide or euthanasia because well people and people who make money off of the long-term sick and dying say so.  And because living in this capitalistic, patriarchal nightmare is so hideous for so many people that “suicide contagion” exists, where just knowing that someone, somewhere had whatever it took to end themselves is likely to cause untold numbers of happy, healthy consumers with bright futures to do the same damn thing.  Yeah that’s it, let’s keep telling ourselves that.

The letter as published is reprinted below.  The unedited letter supposedly exists online somewhere if anyone cares to look and has the energy to figure out how and where the edited version differs from the original.  Comments are open below.

Farewell – A Last Post from Anne Örtegren

Nobody can say that I didn’t put up enough of a fight.

For 16 years I have battled increasingly severe ME/CFS. My condition has steadily deteriorated and new additional medical problems have regularly appeared, making it ever more difficult to endure and make it through the day (and night).

Throughout this time, I have invested almost every bit of my tiny energy in the fight for treatment for us ME/CFS patients. Severely ill, I have advocated from my bedroom for research and establishment of biomedical ME/CFS clinics to get us proper health care. All the while, I have worked hard to find something which would improve my own health. I have researched all possible treatment options, got in contact with international experts and methodically tried out every medication, supplement and regimen suggested.

Sadly, for all the work done, we still don’t have adequately sized specialized biomedical care for ME/CFS patients here in Stockholm, Sweden – or hardly anywhere on the planet. We still don’t have in-patient hospital units adapted to the needs of the severely ill ME/CFS patients. Funding levels for biomedical ME/CFS research remain ridiculously low in all countries and the erroneous psychosocial model which has caused me and others so much harm is still making headway.

And sadly, for me personally things have gone from bad to worse to unbearable. I am now mostly bedbound and constantly tortured by ME/CFS symptoms. I also suffer greatly from a number of additional medical problems, the most severe being a systematic hyper-reactivity in the form of burning skin combined with an immunological/allergic reaction. This is triggered by so many things that it has become impossible to create an adapted environment. Some of you have followed my struggle to find clothes and bed linen I can tolerate. Lately, I am simply running out. I no longer have clothes I can wear without my skin “burning up” and my body going into an allergic state.

This means I no longer see a way out from this solitary ME/CFS prison and its constant torture. I can no longer even do damage control, and my body is at the end of its rope. Therefore, I have gone through a long and thorough process involving several medical assessments to be able to choose a peaceful way out: I have received a preliminary green light for accompanied suicide through a clinic in Switzerland.

When you read this I am at rest, free from suffering at last. I have written this post to explain why I had to take this drastic step. Many ME/CFS patients have found it necessary to make the same decision, and I want to speak up for us, as I think my reasons may be similar to those of many others with the same sad destiny.

These reasons can be summed up in three headers: unbearable suffering; no realistic way out of the suffering; and the lack of a safety net, meaning potential colossal increase in suffering when the next setback or medical incident occurs.

Important note Before I write more about these reasons, I want to stress something important. Depression is not the cause of my choice. Though I have been suffering massively for many years, I am not depressed. I still have all my will and my motivation. I still laugh and see the funny side of things, I still enjoy doing whatever small activities I can manage. I am still hugely interested in the world around me – my loved ones and all that goes on in their lives, the society, the world (what is happening in human rights issues? how can we solve the climate change crisis?) During these 16 years, I have never felt any lack of motivation.

On the contrary, I have consistently fought for solutions with the goal to get myself better and help all ME/CFS patients get better. There are so many things I want to do, I have a lot to live for. If I could only regain some functioning, quieten down the torture a bit and be able to tolerate clothes and a normal environment, I have such a long list of things I would love to do with my life!

Three main reasons So depression is not the reason for my decision to terminate my life. The reasons are the following:

1. Unbearable suffering Many severely ill ME/CFS patients are hovering at the border of unbearable suffering. We are constantly plagued by intense symptoms, we endure high-impact every-minute physical suffering 24 hours a day, year after year. I see it as a prison sentence with torture. I am homebound and mostly bedbound – there is the prison. I constantly suffer from excruciating symptoms: The worst flu you ever had. Sore throat, bronchi hurting with every breath. Complete exhaustion, almost zero energy, a body that weighs a tonne and sometimes won’t even move. Muscle weakness, dizziness, great difficulties standing up. Sensory overload causing severe suffering from the brain and nervous system. Massive pain in muscles, painful inflammations in muscle attachments. Intensely burning skin. A feeling of having been run over by a bus, twice, with every cell screaming. This has got to be called torture.

It would be easier to handle if there were breaks, breathing spaces. But with severe ME/CFS there is no minute during the day when one is comfortable. My body is a war zone with constant firing attacks. There is no rest, no respite. Every move of every day is a mountain-climb. Every night is a challenge, since there is no easy sleep to rescue me from the torture. I always just have to try to get through the night. And then get through the next day.

It would also be easier if there were distractions. Like many patients with severe ME/CFS I am unable to listen to music, radio, podcasts or audio books, or to watch TV. I can only read for short bouts of time, and use the computer for even shorter moments. I am too ill to manage more than rare visits or phone calls from my family and friends, and sadly unable to live with someone. This solitary confinement aspect of ME/CFS is devastating and it is understandable that ME/CFS has been described as the “living death disease”.

For me personally, the situation has turned into an emergency not least due to my horrific symptom of burning skin linked to immunological/allergic reactions. This appeared six years into my ME/CFS, when I was struck by what seemed like a complete collapse of the bodily systems controlling immune system, allergic pathways, temperature control, skin and peripheral nerves. I had long had trouble with urticaria, hyperreactive skin and allergies, but at this point a violent reaction occurred and my skin completely lost tolerance. I started having massively burning skin, severe urticaria and constant cold sweats and shivers (these reactions reminded me of the first stages of the anaphylactic shock I once had, then due to heat allergy).

Since then, for ten long years, my skin has been burning. It is an intense pain. I have been unable to tolerate almost all kinds of clothes and bed linen as well as heat, sun, chemicals and other everyday things. These all trigger the burning skin and the freezing/shivering reaction into a state of extreme pain and suffering. Imagine being badly sunburnt and then being forced to live under a constant scalding sun – no relief in sight.

At first I managed to find a certain textile fabric which I could tolerate, but then this went out of production, and in spite of years of negotiations with the textile industry it has, strangely, proven impossible to recreate that specific weave. This has meant that as my clothes have been wearing out, I have been approaching the point where I will no longer have clothes and bed linen that are tolerable to my skin. It has also become increasingly difficult to adapt the rest of my living environment so as to not trigger the reaction and worsen the symptoms. Now that I am running out of clothes and sheets, ahead of me has lain a situation with constant burning skin and an allergic state of shivering/cold sweats and massive suffering. This would have been absolutely unbearable.

For 16 years I have had to manage an ever-increasing load of suffering and problems. They now add up to a situation which is simply no longer sustainable.

2. No realistic way out of the suffering A very important factor is the lack of realistic hope for relief in the future. It is possible for a person to bear a lot of suffering, as long as it is time-limited. But the combination of massive suffering and a lack of rational hope for remission or recovery is devastating.

Think about the temporary agony of a violent case of gastric flu. Picture how you are feeling those horrible days when you are lying on the bathroom floor between attacks of diarrhoea and vomiting. This is something we all have to live through at times, but we know it will be over in a few days. If someone told you at that point: “you will have to live with this for the rest of your life”, I am sure you would agree that it wouldn’t feel feasible. It is unimaginable to cope with a whole life with the body in that insufferable state every day, year after year. The level of unbearableness in severe ME/CFS is the same.

If I knew there was relief on the horizon, it would be possible to endure severe ME/CFS and all the additional medical problems, even for a long time, I think. The point is that there has to be a limit, the suffering must not feel endless.

One vital aspect here is of course that patients need to feel that the ME/CFS field is being taken forward. Sadly, we haven’t been granted this feeling – see my previous blogs relating to this here and here.

Another imperative issue is the drug intolerance that I and many others with ME/CFS suffer from. I have tried every possible treatment, but most of them have just given me side-effects, many of which have been irreversible. My stomach has become increasingly dysfunctional, so for the past few years any new drugs have caused immediate diarrhoea. One supplement triggered massive inflammation in my entire urinary tract, which has since persisted. The list of such occurrences of major deterioration caused by different drugs/treatments is long, and with time my reactions have become increasingly violent. I now have to conclude that my sensitivity to medication is so severe that realistically it is very hard for me to tolerate drugs or supplements.

This has two crucial meanings for many of us severely ill ME/CFS patients: There is no way of relieving our symptoms. And even if treatments appear in the future, with our sensitivity of medication any drug will carry a great risk of irreversible side-effects producing even more suffering. This means that even in the case of a real effort finally being made to bring biomedical research into ME/CFS up to levels on par with that of other diseases, and possible treatments being made accessible, for some of us it is unlikely that we would be able to benefit. Considering our extreme sensitivity to medication, one could say it’s hard to have realistic hope of recovery or relief for us.

In the past couple of years I, being desperate, have challenged the massive side-effect risk and tried one of the treatments being researched in regards to ME/CFS. But I received it late in the disease process, and it was a gamble. I needed it to have an almost miraculous effect: a quick positive response which eliminated many symptoms – most of all I needed it to stop my skin from burning and reacting, so I could tolerate the clothes and bed linen produced today. I have been quickly running out of clothes and sheets, so I was gambling with high odds for a quick and extensive response. Sadly, I wasn’t a responder. I have also tried medication for Mast Cell Activation Disorder and a low-histamine diet, but my burning skin hasn’t abated. Since I am now running out of clothes and sheets, all that was before me was constant burning hell.

3. The lack of a safety net, meaning potential colossal increase in suffering when the next setback or medical incident occurs The third factor is the insight that the risk for further deterioration and increased suffering is high.

On top of the nearly unbearable symptoms it is very likely that in the future things will get even worse. An example in my case could be my back and neck pain. I would need to strengthen muscles to prevent them from getting worse. But the characteristic symptom of Post-Exertional Malaise (PEM) when I attempt even small activities, is hugely problematic.

Whenever we try to ignore the PEM issue and push through, we immediately crash and become much sicker. We might go from being able to at least get up and eat, to being completely bedbound, until the PEM has subsided. Sometimes, it doesn’t subside, and we find ourselves irreversibly deteriorated, at a new, even lower baseline level, with no way of improving.

PEM is not something that you can work around.

For me, new medical complications also continue to arise, and I have no way of amending them. I already need surgery for one existing problem, and it is likely that it will be needed for other issues in the future, but surgery or hospital care is not feasible for several reasons:

One is that my body seems to lack repairing mechanisms. Previous biopsies have not healed properly, so my doctor is doubtful about my ability to recover after surgery.

Another, more general and hugely critical, is that with severe ME/CFS it is impossible to tolerate normal hospital care. For ME/CFS patients the sensory overload problem and the extremely low energy levels mean that a normal hospital environment causes major deterioration. The sensory input that comes with shared rooms, people coming and going, bright lights, noise, etc, escalates our disease. We are already in such fragile states that a push in the wrong direction is catastrophic. For me, with my burning skin issue, there is also the issue of not tolerating the mattresses, pillows, textile fabrics, etc used in a hospital.

Just imagine the effects of a hospital stay for me: It would trigger my already severe ME/CFS into new depths – likely I would become completely bedbound and unable to tolerate any light or noise. The skin hyperreactivity would, within a few hours, trigger my body into an insufferable state of burning skin and agonizing immune-allergic reactions, which would then be impossible to reverse. My family, my doctor and I agree: I must never be admitted to a hospital, since there is no end to how much worse that would make me.

Many ME/CFS patients have experienced irreversible deterioration due to hospitalization. We also know that the understanding of ME/CFS is extremely low or non-existent in most hospitals, and we hear about ME/CFS patients being forced into environments or activities which make them much worse. I am aware of only two places in the world with specially adjusted hospital units for severe ME/CFS, Oslo, Norway, and Gold Coast, Australia. We would need such units in every city around the globe.

It is extreme to be this severely ill, have so many medical complications arise continually and know this: There is no feasible access to hospital care for me. There are no tolerable medications to use when things get worse or other medical problems set in. As a severely ill ME/CFS patient I have no safety net at all. There is simply no end to how bad things can get with severe ME/CFS.

Coping skills – important but not enough I realize that when people hear about my decision to terminate my life, they will wonder about my coping skills. I have written about this before and I want to mention the issue here too:

While it was extremely hard at the beginning to accept chronic illness, I have over the years developed a large degree of acceptance and pretty good coping skills. I have learnt to accept tight limits and appreciate small qualities of life. I have learnt to cope with massive amounts of pain and suffering and still find bright spots. With the level of acceptance I have come to now, I would have been content even with relatively small improvements and a very limited life. If, hypothetically, the physical suffering could be taken out of the equation, I would have been able to live contentedly even though my life continued to be restricted to my small apartment and include very little activity. Unlike most people I could find such a tiny life bearable and even happy. But I am not able to cope with these high levels of constant physical suffering.

In short, to sum up my level of acceptance as well as my limit: I can take the prison and the extreme limitations – but I can no longer take the torture. And I cannot live with clothes that constantly trigger my burning skin.

Not alone – and not a rash decision In spite of being unable to see friends or family for more than rare and brief visits, and in spite of having limited capacity for phone conversations, I still have a circle of loved ones. My friends and family all understand my current situation and they accept and support my choice. While they do not want me to leave, they also do not want me to suffer anymore.

This is not a rash decision. It has been processed for many years, in my head, in conversations with family and friends, in discussion with one of my doctors, and a few years ago in the long procedure of requesting accompanied suicide. The clinic in Switzerland requires an extensive process to ensure that the patient is chronically ill, lives with unendurable pain or suffering, and has no realistic hope of relief. They require a number of medical records as well as consultations with specialized doctors.

For me this end is obviously not what I wanted, but it was the best solution to an extremely difficult situation and preferable to even more suffering. It was not hasty choice, but one that matured over a long period of time.

A plea to decision makers – Give ME/CFS patients a future! As you understand, this blog post has taken me many months to put together. It is a long text to read too, I know. But I felt it was important to write it and have it published to explain why I personally had to take this step, and hopefully illuminate why so many ME/CFS patients consider or commit suicide.

And most importantly: to elucidate that this circumstance can be changed! But that will take devoted, resolute, real action from all of those responsible for the state of ME/CFS care, ME/CFS research and dissemination of information about the disease. Sadly, this responsibility has been mishandled for decades. To allow ME/CFS patients some hope on the horizon, key people in all countries must step up and act.

If you are a decision maker, here is what you urgently need to do: You need to bring funding for biomedical ME/CFS research up so it’s on par with comparable diseases (as an example, in the US that would mean $188 million per year). You need to make sure there are dedicated hospital care units for ME/CFS inpatients in every city around the world. You need to establish specialist biomedical care available to all ME/CFS patients; it should be as natural as RA patients having access to a rheumatologist or cancer patients to an oncologist. You need to give ME/CFS patients a future.

Please listen to these words of Jen Brea, which sum up the situation in the US, but are applicable to almost every country:

“The NIH says it won’t fund ME research because no one wants to study it. Yet they reject the applications of the world class scientists who are committed to advancing the field. Meanwhile, HHS has an advisory committee whose sole purpose seems to be making recommendations that are rarely adopted. There are no drugs in the pipeline at the FDA yet the FDA won’t approve the one drug, Ampligen, that can have Lazarus-like effects in some patients. Meanwhile, the CDC continues to educate doctors using information that we (patients) all know is inaccurate or incomplete.”

Like Jen Brea, I want a number of people from these agencies, and equivalent agencies in Sweden and all other countries, to stand up and take responsibility. To say: “ME! I am going to change things because that is my job.”

And lastly Lastly, I would like to end this by linking to this public comment from a US agency meeting (CFSAC). It seems to have been taken off the HHS site, but I found it in the Google Read version of the book “Lighting Up a Hidden World: CFS and ME” by Valerie Free. It includes testimony from two very eloquent ME patients and it says it all. I thank these ME patients for expressing so well what we are experiencing.

My previous blog posts:

From International Traveler to 43 Square Meters: An ME/CFS Story From Sweden

Coping With ME/CFS Will Always Be Hard – But There are Ways of Making It A Little Easier

The Underfinanced ME/CFS Research Field Pt I: The Facts – Plus “What Can We Do?

The Underfinanced ME/CFS Research Field Pt II: Why it Takes 20 Years to Get 1 Year’s Research Done

Take care of each other.

Love, Anne

Comments Open.

[clarencebfaber]

9 Signs You Have Adrenal Fatigue Signs & How to Heal It

The Adrenal Fatigue Signs

Adrenal fatigue is a silent condition that can linger for years before going diagnosed. Check out these 9 common (but often misdiagnosed)  adrenal fatigue signs and find out how to heal adrenal fatigue naturally.

Adrenal Fatigue (also known as: “HPA Axis Dysfunction” or “chronic stress”) is a health condition that affects approximately 80% (8 in 10) people at some point in their lifetime (Gallup, 2017).

It is defined as a “collection of unspecified signs and symptoms,” onset by stress, itself that significantly impacts one’s health and/or quality of life.

Physically, adrenal fatigue or HPA Axis Dysfunction, presents as an imbalance in your body’s natural cortisol levels—either too much or too little—to help your body naturally deal with the stress response. This articles will present to you different adrenal fatigue signs.

Hold Up!…What is Cortisol Exactly?!

Cortisol is your “stress hormone”—the hormone that kicks into gear when your body is under stress to help you fight or fly.

Not all stress is a bad thing, and you certainly want that cortisol to “work” for you when you are running from a bear in the wild or dodging a thunderstorm without shelter.

As humans, our stress response has served us well for many years to help us survive, and then ideally, eventually, recover, come down and go back to “normal” when we escape the bear or storm blows over.

Unfortunately however, given our modern day lifestyles, our stressors have become a little more blurried. We no longer live in the wild, running from bears or dodging thunderstorms.

The stressors we face are more long lasting and “hidden”—so much so that they can perpetuate, continuing to drive cortisol up in our autonomic nervous system, long after we THINK stress has passed.(Note: It’s important to note that “adrenal fatigue signs” does not necessarily mean you are fatigued or your cortisol is LOW. In fact, your cortisol hormone levels can actually be very high. More on this later).

In short: Cortisol (or cortisol imbalances) drives all adrenal fatigue signs. 

How do you know if you have adrenal fatigue?!

Adrenal fatigue, or HPA Axis Dysfunction, is diagnosed by assessment—both by evaluating whether you have some of the most common adrenal fatigue signs, as well as a DUTCH hormone test, revealing the exact patterns of your cortisol (stress hormones) and sex hormones in your body.

SIGNS & SYMPTOMS

Do You Have Adrenal Fatigue Signs & Symptoms?: Self-Assessment

Self assessment is the first step to start for determining if you have adrenal fatigue—evaluating your own adrenal fatigue signs.

Common Adrenal Fatigue Signs & Symptoms

Unwanted weight gain or weight loss

Low immune system (easily catch colds, flu)

Lack of energy or usual gusto (particularly mornings and afternoons), lethargy

Mild depression and/or increased anxiety/nervousness

Feeling wired and tired at night

Low Libido

Insomnia

Dry skin

Decreased ability to handle stress

Food allergies and intolerances

Low body temperature

Anxiety, depression and nervousness

Palpitation

Hair loss

Shortness of breath

Feel better (temporarily) after eating

Blood sugar imbalances

Skin breakouts and acne

Need coffee or stimulants to get going

Cravings for sugar or caffeine

Cravings for salt or crunchy things

Increased symptoms of PMS for women. Periods are heavy and then stop, or are almost stopped on the 4th day, only to start flow again on the 5th or 6th day.

Difficulties getting up in the morning

Unable to remember things

Feel tired from 9-10 pm

Lightheaded when rising from lying down

Pain between shoulder blades

Unable to hold corrective adjustment or need for mobility/massage often without improvements

Tremble under pressure

Autoimmune conditions

Constipation, bloating, alternating constipation/diarrhea, IBS and gut conditions

Dry or thin skin

Heart palpitations

Exercise intolerance

Feel better generally when there is less stress (like vacation)

One leg longer than the other

 Phew! That is quite the list!

While, not one of these signs alone means you have “adrenal fatigue,” several of these signs accumulated at once (5+) over the course of several weeks may indicate your body is in “stress mode.”

Unfortunately, given that there is such a wide array of adrenal fatigue signs, adrenal fatigue easily slides under the radar.In fact, many of these signs and symptoms are easily confused or mis-diagnosed as other ailments—completely missing the “root cause” at all (stress).

Here’s a highlight of a few of the most common adrenal fatigue signs that go undiagnosed by many doctors:

9 Adrenal Fatigue Signs (Your Doctor Won’t Tell You About)

Click on each sign to learn a little bit more about common adrenal fatigue signs that go under the radar:

Chronic Constipation, Loose Stools or a Mix of Both (IBS)

Chronic gut issues got you down—no matter how many probiotics you take or healthy food you eat? Similar to the little kid who is constipated or has a poopy diaper—making a face and a fuss over the issue—gut issues arise from the stress we hold inside. Stress is uncomfortable (for the gut) and the stress response (i.e. elevated cortisol) short circuits the normal process of digestion. In addition, the stress from lack of sleep (less than 7 hours per night) also further affects digestion, since full detoxification, digestion and elimination happens while we rest and sleep.

Needing Coffee/Caffeine to Function

Coffee is not innately a bad thing, but when we “need it” for energy, chances are our natural energy system is off. Coffee is a natural stimulant (even decaf) that elevates cortisol. When we make caffeine and coffee consumption a regular habit, we train our cortisol levels to rely on caffeine and stimulants to function. When we don’t have it? May day! If you aren’t human without coffee, this may indicate something else is going on underneath the hood.

Unwanted Weight Gain or Weight Loss

Weight won’t come off—no matter how clean you eat or how much you workout?! Or find the weight “falls off” without even trying—maybe even to an unhealthy level? Since your hormone balance helps keep your weight in check, when your cortisol is off, along with your other hormones, then weight issues may arise.

Decreased Exercise Performance

Find yourself struggling to keep up with your routine you’ve always had? Or have the mental strength and energy to get through the workout, but your performance is declining or not improving? Exercise is a natural (healthy) stressor. However, the “Goldilocks” approach is a must. Without enough recovery, rest or variety between workouts, eventually the body may let you know, resulting in decreased performance or “gains.” Similar to running from a bear, our body can only run from a bear for so long before it poops out, or workouts that you once considered “easy,” become challenging or almost intolerable for some as other symptoms arise when you do workout (such as: shortness of breath, muscle fatigue or soreness, low energy, decreased blood pressure, increased or decreased heart rate, decline in strength or power output, looking at the clock for when the workout is over).

Anxiety

1 in 5 people struggle with anxiety—many of these cases seemingly unexplainable. “I’m just an anxious person,” “My mom had anxiety too—it runs in my family,” “I’ve always had it.” However, when we look to the cause or trigger behind anxiety, 9 times out of 10, HPA Axis Dysfunction or adrenal fatigue is at play. How does this happen? From gut dysfunction and bacterial or fungal overgrowth, to lack of sleep, dehydration, environmental toxins, nutrient imbalances, light exposure (at the wrong times), lack of human connection, lack of nature, all work no play, burning a candle at both ends, etc. —there are tons of “stressors” that lead the body to physiologically struggle with anxiety.

In fact, gut issues in particular are one of the top driving stressors for many psychological imbalances. Given that 31 hormones alone are produced in the gut—including serotonin (your “feel good” brain chemicals) AND your healthy bacteria in the gut work to help lower cortisol )the notorious “stress” hormone), when your gut is imbalanced, you can bet your bottom dollar other parts of your health get imbalanced too (hello anxiety!)

Hypoglycemia & Hyperglycemia

Riding the “blood sugar” roller coaster throughout the day goes hand in hand with cortisol imbalances. Like caffeine, cortisol loves glucose (i.e. sugar) and needs glucose and sugar to function at it’s peak. Hence, when your body experiences a dip in blood sugar (hypoglycemia), it also sends your cortisol into a low dip (adrenal fatigue).

As Dr. Wilson explains in his book “Adrenal Fatigue in the 21st Century,” “Hypoglycemia commonly occurs during adrenal fatigue when low epinephrine, norepinephrine and cortisol are combined with the high insulin levels of stress. The low levels of adrenal hormones that can occur during adrenal fatigue may fail to raise blood glucose enough to meet the increased demand.

Hypoglycemia is characterized by:

Headaches

Shakiness

Muscle twitches and tremors

Reactive hypoglycemia (blood sugar lowers after you eat a meal, rather than rises)

Sleepiness or feeling low on energy

Can’t go long without food between meals

Electrolyte imbalances

Naturally, you then crave fuel—especially carbs, sugar or a snack to spike it. The result? A cortisol and blood sugar spike that may take your blood sugar over the top (i.e. hyperglycemia) until the next lull when the sugar wears off. Up and down, up and down.

Unfortunately, the hypoglycemia symptoms experienced in HPA Axis Dysfunction are often than not sub-clinical—meaning that the person experiences ALL the symptoms of clinical hypoglycemia symptoms even though the blood sugar reading is “normal” (60-70 mg/dl). On blood work, their fasting serum blood sugar and glucose tolerance tests are usually normal. Conventional doctors not aware of the adrenal signs will often miss this.

Lack of Appetite

Simply put: Cortisol blunts hunger cues. In fact, under eating is common in adrenal fatigue—not because you’re dieting or trying to, but because you are simply not hungry. This often happens for chronic dieters who, at one time, ate a very restrictive diet, only to find that when they go back to eating more food or being off the diet, they are no longer very hungry. Chronic undereating also is a common phenomenon that occurs for those who switch to a “clean diet,” vegan or paleo diet—cutting out entire food groups, accidentally failing to replace lost calories with other sources of fuel. The result? A stress response in the body—slowing the body’s metabolism down and suppressing your appetite included.

Electrolyte Imbalances

Sodium, potassium, magnesium, chloride and calcium are key body “regulators” in healthy persons that help maintain fluid balance. When the body is imbalanced in adrenal fatigue, hydration status and cellular balance also gets off due to cortisol’s influence on our key water regulators (antidiuretic hormone (ADH) and aldosterone))! Individuals with adrenal fatigue are more likely to experience dehydration, shortness of breath, heart palpitations and general weakness—directly influenced by electrolyte imbalances. Dr. Lam explains this phenomenon well in his article on Electrolyte Imbalance here.

Suppressed Immunity 

The hormones produced by your adrenal glands, particularly cortisol, play an important role in regulating your immune system. If your cortisol levels go too low or too high, this can lead to infections, chronic inflammation, autoimmune diseases or allergies. In short spurts, cortisol can boost your immunity by limiting inflammation.

After assessing your current presentation of signs and symptoms, formal hormone assessment and testing is the next recommended step for understanding your cortisol and hormone patterns (high, low, disrupted, etc.).

Do You Have Adrenal Fatigue Signs & Symptoms?: DUTCH Cortisol Test

The other measure of adrenal fatigue is a urine-saliva hormone test known as the “DUTCH Plus Test.”

To date, the DUTCH Plus Test is the gold standard for measuring your cortisol levels and patterns over the course of an entire day (or 28 days), as opposed to a blood test (one-stick in time) or saliva samples alone.

The thing that makes the DUTCH Plus Test unique is that it captures the cortisol awakening response (CAR) that sets the tone for your personal unique pattern of cortisol for the rest of the day.

Since cortisol (stress hormones) are highest in the morning, identifying what your personal cortisol baseline is in the first 30-minutes of waking with the DUTCH Plus allows the other collection samples throughout the rest of the day to be reported accurately in reference to your baseline.

But Stress is Normal Right?

“But isn’t stress inevitable…a normal part of life?!”

Yes, stress IS inevitable, but when the amount of stressors in your life SURPASSES your body’s own ability to recover from that stress is when adrenal fatigue arises.

Essentially, adrenal fatigue happens when your body is UNABLE to “be human” in its fullest capacity—healthy, balanced, able to fight off stress then recover, and in harmony with the world around it.

What Causes Adrenal Fatigue?: Stress 101

It’s crucial to understand that “adrenal fatigue” (or HPA Axis Dysfunction) can be caused by several aspects of our modern lifestyles.

Although most people typically think of stress as psychosocial and emotional stress, (and those definitely are big contributors), stress is most broadly defined as “any event in which environmental demands, internal demands, or both tax or exceed the adaptive resources of an individual.”

Any trigger or event that causes “wear and tear” on the body is a stressor.

It does NOT have to be psychological or emotional. 

For example, you can seemingly have “everything going for you”—not a care in the world (successful, wealthy, busy social life, big social media following), and on vacation on a beach in Costa Rica, but still be under a crazy amount stress if you have an undiagnosed parasitic infection in your gut, an autoimmune condition, iron overload, and hormone imbalances (a missing period, PCOS, pre-mature menopause, etc.).

So, if stress is normal, how does your body get “overloaded” or “over stressed” in the first place?

There are 5 primary types of stressors of adrenal fatigue including:

5 Most Common Stressors of Adrenal Fatigue

Lack of Basic Health Needs

Poor quality diet

Hydration & quality water

Lack of sleep

Sedentary lifestyle

Overtraining (lack of recovery)

Blood sugar imbalances (lack of protein, lack of fat)

Nutrient deficiencies

Packaged and processed foods

 Gut & Hormone Imbalances

Underlying gut dysfunction (Parasites, bacterial overgrowth, yeast overgrowth)

Food intolerances

Leaky gut

Hormone imbalances (birth control, steroids, etc.)

Circadian Rhythm Dysfunction

Light exposure at the wrong times

Jet lag

Caffeine consumption

Blue light/LED light (screens)

Shift work

Burning a candle at both ends

Inflammation

Traumatic event (car wreck, etc.)

Surgery

Infection

Long term medication use (NSAID, antibiotic, steroids, SSRIS)

Environmental Exposures

Food additives

Poor quality air

Plastic tupperware

Tap water

Psychosocial/Emotional Stress

Type A personality—and difficulty listening to your body over your schedule

Relationship stress

Financial stress/pressures

Lack of control

Burnout

Not talking about your stress (bottling it up)

Lack of play/fun

Not doing things you love

Serotonin suppression (“feel good” brain chemicals)

Social Media comparison/endless scrolling

Trying to be all things to all people/people pleasing

FOMO (lack of downtime for yourself)

News binging

 WHAT TO DO ABOUT IT

Adrenal fatigue recovery is no one-size-fits-all approach. Treatment usually consists of a combination of nutrition, lifestyle, and supplement/herb recommendations.

Treatment ALSO depends on how long you have struggled with adrenal fatigue, as well as what type of adrenal fatigue you have (is your cortisol high or low?). This is why salivary-urine hormone testing is highly recommended (not blood testing, as it will not catch the presentation of your cortisol patterns).

A common roadblock many people run into with adrenal fatigue is self-diagnosis and then self-hacked protocols with various supplements to try to “fix it.”

Unfortunately, you CANNOT supplement your way out of a poor diet or stressful lifestyle. in addition, if you take the wrong supplement for you (such as a formula with licorice, if your cortisol is already high), you may be doing more harm than good for your body.

That said, here are a few universal adrenal fatigue recovery must-haves for any adrenal fatigue treatment plan.

4 Adrenal Fatigue Treatment Must Haves

Eat a Nutrient-Dense Diet

Eat a real food, nutrient-dense diet, composed of a serving of sustainable protein, veggies and healthy fats with each meal. A Paleo or Autoimmune Protocol template are good places to start.

Steer clear of sugar, artificial sweeteners, soy, dairy, gluten and packaged/processe food

Cut the coffee (4-8 weeks)

For those in the initial stages of healing (4-8 weeks), mini meals may be better (3 small meals and 2-3 snacks, with an emphasis on protein, healthy fats, and moderate carbs)

No extreme cleanses or diets; some people may do best off of a moderate-lower carb and moderate-higher fat for blood sugar reasons, but carbs are still your friend

Movement

For those who have been overdoing it in the gym, take a break (30-60 days) from intense exercise (CrossFit, HIIT, heavy weight lifting, intense spin classes, yoga with weights), and replace with moderate weight lifting and light aerobic activity (walking, swimming, spinning)

Incorporate at least 1-2 complete rest days from the gym in favor of recovery; Sometimes a complete break (1-4 weeks) from movement may be beneficial and necessary.

Focus more on walking, yoga, pilates, moderate weight lifting, and low-intensity aerobic activities (Biking, swimming, Tai Chi) that allow your body to recover and regain strength

Rest & Recovery 

Sleep 7-9 hours, if you can go to bed by 10 pm and wakeup around 7 am

Incorporate “recovery” into your healing (mobility work, sun light therapy, float tank therapy, acupuncture, massage, as you get stronger: sauna)

Consider counseling, working with a coach or mindfulness based stress reduction

Biofeedback, like HeartMath’s Inner Balance, is also effective for gaining control of your stress patterns

Supplements & Herbs

Probiotic & Prebiotic. Your gut is the gateway to health! (Hormones included). Support a healthy gut eco-system with a soil based probiotic and easily digested prebiotic (1 tsp) daily.

Basic Nutrients for strengthening your adrenal glands include:

Vitamin C (citrus fruits, greens, berries and liposomal supplements)

Magnesium (Magneisum Glycinate supplements, dark leafy greens, raw nuts, dark chocolate)

Ashwaganda and Rhodiola are 2 herbs that promote general cortisol balance. I like the blend by HPA Balance for both high and low cortisol presentations.

Phosphatidylserine (PS). A naturally occurring phospholipid essential for the membranes of all cells, especially in the central nervous system that works to reduce periods of “high” stress. I love APEX Adrena Calm lotion —it works instantly to combat the stress response.

Lavender Essential Oil tends to have a calming affect for those who are “wound up” and Peppermint Essential Oil has a “boosting” effect for those who need a pick me up.

Anti-Inflammatory Supplements. Calm internal stress with CBD Oil and Liposomal Curcumin for body balance.

Melatonin. Your sleep hormone—supports better sleep if you are wound up at night. It also  helps regulate other hormones and maintains the body’s circadian rhythm. Try Sleep Remedy before bed.

Customize. Test your cortisol with the DUTCH Test to determine your cortisol presentation before supplementing specifically for cortisol imbalances. Connect with Dr. Lauryn for your own test and personal healing plan today.

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