A key reason for this photo sale - aside from enjoying photography - is that I'm in some of the critical phases of a severe and life threatening immune damaging disease - MECFS - and need private medical help (and some health related living expenses).
You can find the photos via the page navigation above, or look at this blog entry about the newer photos.
Alas, MECFS is both life threatening and not covered by public health, hence the photos-for-health sale, to afford private specialist help.
MECFS depletes immune cells to AIDS like levels, and damages blood vessels and energy metabolism additionally. Having MECFS is like constantly being beaten up, with increasing organ damage leading to more and more organ damage and pain, util the body can't keep going.
Arguably MECFS is more severe than AIDS (more on this below), it overlaps in biological mechanisms and mortality rates.
MECFS Mortality rates are similar to untreated AIDS ; MECFS see a median life expectancy reduction of 15 years and many die even before they're 40 or 50. I've written a doc with scientific links about MECFS.
All MECFS treatment is in private medicine
As with AIDS in the 70s and early 80s, public health has overlooked MECFS and there's no treatment available in public health, despite key mechanisms being researched in medical research and helpful treatments being available. (I've compiled a brief list of key medical MECFS research here, and have seen some private specialists working on the basis of this, getting good help).
Consequently, I'm trying to gather money to afford private medical help.
Costs are in the thousands per month, as with AIDS care, but privately paid. I've written about private medical help for MECFS here, together with price lists from specialists.
Mortality dangers are definitely real : In the last five years I've almost died from sudden life threatening complications due to MECFS. I got a sudden three week long internal bleeding in 2020, and a sudden lung blood clot in 2022. Many others affected by MECFS haven't been so lucky and died (like Bridget here, or Meave here ).
More about lacking public healthcare for MECFS
I've written about why there's lacking (public) health help for MECFS, despite severe illness.
About me
I usually code and design for NGOs and research institutions, but, now severely struck by a immune damaging disease, MECFS, I can't work and pay for medical help and living expenses. Photography has been a hobby since childhood, and having been exhibited internationally, I hope you might also find some enjoyment and value from my photos. I want to return to good-for-society coding and design, but I need to make some money to stay alive to do that. Hence te photo sale.
You can see my portfolio of work here.
You can see my flickr photo collection here
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More about MECFS
In short, with MECFS reducing one's immune cell level severely, one falls prey to all manner of diseases, feeling constantly in a high level of pain, like someone's beaten one up, likely due to ensuing organ damage. Without an effective immune system, one can end up accumulating disease and body damage until the body can't keep going. Mortality rates for MECFS are like that of untreated AIDS. MECFS shortens life expectancy by a medium of 17 years. I've already gotten life threatening complications from it twice.
Being able to afford private medical help for MECFS would be a game changer, for life.
Lacking public health help for MECFS
As with AIDS - another immune damaging disease - in the 70s and 80s, MECFS is overlooked by public medicine, although medical research on MECFS exists and helpful treatments exist. Hence, all MECFS help is in the private realm.
- I've written about why public health help for MECFS is lacking, here.
- Even the (just) former German health minister, Karl Lauterbach (educated at Harvard), regrets MECFS help in public health is lacking.
- A list of patients in several countries getting no MECFS treatment in public health,
Only avenue to MECFS help : private specialists
Minimal nutritional treatment costs ca 500 euros a month. The more effective immune cells upplementation - IVIG - costs around 3000-5000 euros a month. Blood cleaning, Apheresis, from excess clot factors and toxins the body is unable to throw out, costs 1200 euros for a 5 litre session, and one needs several a month.
Medical examinations to evaluate MECFS damage costs 1500-3000 euros. A visit to a private specialist costs 300 euros an hour.
I've written about private medical help for MECFS here, together with price lists from specialists.