I plan to write a better 'about me' piece in the near future. For now
I've just cut and pasted in a brief 'about me' text from the HFME website.
This page also features a short piece explaining exactly why I created the HHH website.
At the bottom of the page I've included a short 'illness timeline' chart about how my illness has changed over time and why..
1. To bring all the best information on many different but related topics together on the one website.
Great books on diet often have very sketchy or even terrible information in them about supplements, toxin avoidance and detoxification. The great books out there on supplements often have very sketchy or even terrible information in them about diet. The list goes on.
This makes sense in a way as nobody can be an expert on everything and probably the reason why these books are so very good is that the author has concentrated on one topic and really taken the time to master it. But it does mean that unfortunately just recommending one perfect book for health is impossible. If there were one perfect book I’d not have bothered with this website, I’d just tell everyone I knew to buy that book.
The programs outlined in these great-on-one-topic books can be successful by themselves for many patients as the books themselves explain.
But for those of us with long-term and severe problems which are more stubborn and very hard to even make a dent in, I personally think you need to come at them with ALL guns blazing and to use every bit of ammunition you can get. Nothing but a really comprehensive program will work for some of us. One based on the best advice from experts in each of the important fields.
The beautiful thing is that all these separate elements work together so very well too, without conflict. You end up with something that is far more than the sum of its parts, I think. Pure gold.
2. To tell people about all the great books out there and to encourage the reading of them. Most people have no idea of the wealth of information available and the very real possibilities of improvement in health offered by deep healing.
3. To tell people about all the books and crackpot theories which are a waste of time and money.
Trying a new treatment costs you money, research time and the cost of false hope can be very high. We all just want to be well just so much. Healthy people have no idea how much we want it and need it and how much is at stake and how emotionally fraught the topic of treatment is.
New treatments can often make patients far sicker as well, or even lead to a long-term or permanent decline or disease progression. This can of course all still apply to a treatment that is in the ‘natural’ category just as well as drug based treatments.
It takes so much out of you to grit your teeth are dare to hope that this time the new thing you are trying will work. It really does. Going against ‘mainstream’ medicine and what is well known and popularly known can also be difficult socially, and more so each time you do it. People do not have a limited capacity to try new things and anyone who says to a very ill person that ‘you have nothing to lose by trying treatment x’ is being quite ignorant.
All the bad information out there on treatment often has the terrible effect of leaving patients too fed up, hopeless, poor or even just too ill to look for better information. So they just miss out. It’s terrible.
4. To provide summaries of many of the best health books out there and a starting point for research for ill people. Especially for very ill and disabled people who are often overwhelmed with starting the research process, but who need to start this process so urgently.
5. To add to the information out there about healing reactions, which in even the very best health books is enormously understated when it comes to very ill patients. Most of the information on this site is just me summarising great health books, it isn’t my own opinion. But on the topic of healing reactions and their range and severity I do feel I have extra information to add to the discussion. This information comes from my own experiences with healing reactions and also from talking to many patients about theirs.
Many very ill patients need to go far slower with introducing new supplements etc. and have a greater potential to be made very ill by new treatments and by deep healing treatments generally than the vast majority of doctors seem to be aware of.
6. As an aid to my own memory and to my own compliance with my treatment plan. I have severe memory issues as part of M.E. and sticking to a strict regime and diet when so ill is not easy. Writing down what I have learned from each book I read helps me remember it and going over the information again and again and reminding myself why it is all so important makes me more likely to eat well that day or week, and so on.
7. Because this is the site I wish so much I’d had when I was first ill. I can’t change my past but I can at least try and help others that are in the same situation I was in many years ago when first ill.
8. To try and help M.E. patients in particular. M.E. patients have so few options with medical care and even in accessing basic welfare, being treated respectfully or fairly by doctors but also often friends and family, or qualifying for getting help with tasks of daily living if required. They need help, hope and improvement so very much. Many of my friends have M.E. and are facing such dire circumstances right now, in so many ways, it is unbearable to me to even think about.
9. To try and even the playing field a bit. There are so many terrible quality sites out there, we need all the good ones we can get. Every good site helps.
10. Because the information on this site just makes so much sense. It’s just not right that so few people know about it.
Jodi Bassett is an Australian writer, artist, graphic designer, and patient advocate.
Jodi contracted Myalgic Encephalomyelitis (M.E.) in 1995 when she was just 19. She went from being healthy and happy one day, to very ill and disabled with the neurological disease M.E. the next.
When first ill, Jodi was reduced to 40% of her pre-illness activity level. Due to inappropriate medical advice leading to sustained overexertion (which causes serious and permanent bodily damage in M.E.), Jodi's illness quickly went from moderate to extremely severe. By 1999 she was capable of less than even 5% of her pre-illness activity level.
After more than a decade of the disease becoming worse as each year passed, Jodi's disability level finally began to stabilise. Thanks to appropriate care, education and support, her condition improved from extremely severe to severe in 2007. At the time of writing her condition continues, with careful management and some appropriate nutritional and other treatments, to improve very slowly month by month.
She still requires the help of part-time carers to live, and is currently severely affected, housebound and largely bedbound. All of her activism and advocacy has been conducted from her bed using a laptop and a reclining laptop stand. Jodi is at best able to spend just 30 to 45 minutes a day (on average) on M.E. advocacy.
In 2004, Jodi Bassett started the 'A Hummingbirds' Guide to M.E.' website to try to improve awareness of the facts of M.E., and to stop other M.E. patients from being needlessly made far more ill and disabled due to inappropriate medical advice based on the false notion that M.E. is the same thing as 'CFS.'
In 2009, with the help of a group of similarly-minded M.E. advocates from around the world, Jodi founded 'The Hummingbirds' Foundation for M.E.' in order to advocate for M.E. patients on a much bigger scale and to get the relevant information to a much wider audience worldwide.
For the same or similar reasons, the majority of HFME contributors are likewise disabled.
There is very little advocacy for M.E. patients, and HFME contributors have determined that despite their high disability levels, they must do what they can for M.E. advocacy.
The vast majority of charities that started out advocating for M.E. patients are now actively supporting the same misinformation they were created to oppose. This is helped immeasurably by the bogus concept of 'ME/CFS.' For 20 years now, M.E. patients have been subjected to serious medical neglect and abuse, even unto death in some cases. The situation is actually worsening year by year as slick, faux advocacy groups gain more and more popularity and support from uneducated and misinformed - and often misdiagnosed - patients.
HFME is run by and for M.E. patients.
HFME contributors also aim to advocate for those non-M.E. patients given the always meaningless 'CFS' diagnosis who also are not being served well by the various 'CFS' charities, and who are also harmed by the bogus disease category of 'CFS' and the overwhelming triumph of financial greed over ethics, science and basic human rights.
'After writing my first paper on M.E. in 2004 I suffered excruciating pain, heart problems, seizures, blackouts and loss of vision for weeks and months. I never could have imagined back then being able to create a site like the HFME website is today, or writing books on the topic of M.E. as I recently have. Something I began out of utter personal desperation is now something positive that I do out of choice, to try and help others.
I'd understand it if someone were to look at my contributions to HFME and be sceptical that they could have been done by someone so ill and disabled. It really is amazing what 30 minutes of work a day and lots of late-night musings, list-writing and notebook scribblings amount to after 7 solid years.
While I'd really love to be given access to my pre-M.E. brain for a few weeks to polish my writing style, I feel extremely lucky I've been able to do so much, bit by tiny bit. Some days I can still hardly read any of the site let alone believe I wrote so much of it!'
If you'd like to learn more about M.E. you may like to check out this video. The voice narrating the video is my own.
There is no need for anyone to feel they have to read this chart. Reading long descriptions of other people's illnesses can be very trying and boring, I know!
Keeping up with study and housework is becoming harder. Feel much more ill as the months pass. Collapse at the end of the year.
Keeping up with study and housework is becoming harder. I know now I can’t keep going as I am and that something is very wrong, but I’m still refusing to admit it to myself and determined to keep pushing myself to do things as my (very ignorant and wrong, it turns out) doctor has advised. The second half of the year I drop back to taking just one or two classes only. This rest allows me to be well enough to start a new university course the next year.
Full time university and I just barely cope physically and mentally. I can do pretty much nothing else but university work or attendance. My ability to think is becoming more affected. I spend the weekends and the four term breaks in bed very ill and able to do almost nothing. These rests improve me a little and so I am able to keep going with the awful adrenaline/crash cycle.
Full time university and I’m just barely hanging in there. Very grim. Heart problems worsening a lot.
Forced to drop back to just one 3 hour class a week and I’m just very barely managing it and at a huge cost. I attend my class, then drive home. (I have to keep shifting my position in the driver’s seat so I don’t black out for the first few minutes of my drive. Then somehow I find myself in my driveway with no memory of how I got there.) I’m so ill when I get home all I can do is go to bed. I can’t talk or think at all or do anything. I stay in a blackout or collapsed state for 4-5 days or so and then it starts to lift. I still feel terrible but I can spend a few hours doing my university homework. I put myself on complete rest for a day or two, so that I am well enough to attend class again. I spend my four term breaks in bed very ill and able to do almost nothing.
So ill by end of previous year I have no choice but to quit study at the beginning of 2001. Terrifying. I tell myself it’ll only be for 6 months and then I’ll be able to come back. I start some minor nutritional treatments at this time and clean up my diet a bit, but I’m about to have the huge relapse I ‘had to have’ from pushing myself so hard for years when I was so ill. The adrenaline surges have well and truly run out.
What I call a ‘black’ year. Just so ill, and there is just relentless pain and suffering and just doing the daily tasks of living is impossible or just so so difficult. Getting through each day is so hard. Need family help to make my food and do housework, as I can do almost nothing for myself.
A very black year. Just unspeakable. I remember many times seeing myself in the mirror and my face was pure white and my mouth was hanging open, slack. I looked like I had an acquired brain injury, probably because I did.
I remember I would have short visits from friends and I would have to spend almost the whole time with my eyes closed. If I opened them too long I’d start to blackout or feel my eyes rolling back in my head. I remember having visitors being so hard physically that it’d take me almost a week to recover from the visits and I’d remember almost nothing of them or the days after the visits either. Can no longer make phone calls.
I remember spending 3 or 4 hours working up to walking to my ensuite bathroom to go to the toilet. Then trying to not fall over as I walked to the bathroom, and then rocking backwards and forwards as I sat so as to not pass out. Then doing it all over again.
I remember being especially ill at one point and blacking out every time I turned over in bed, with a huge surge of hideous nausea and vertigo. But my memory and thinking problems were very severe as well. So I’d turn over, feel hideous and think ‘gee, I should try and not move for a bit.’ but then, I’d forget a few minutes later and do it again, and have the same thought. I’d only remember I’d done it before while I was in the grips of the effect again, when it was too late. Living hell.
A few glimmers of grey, but at the cost of blacker blacks afterwards. I manage to write my first M.E. advocacy essay over 2 weeks in March amid blackouts and an inability to focus my eyes and to remember a line of text for more than a few seconds at a time.
After 2 weeks somehow it is done and then I spend 8 weeks recovering from the job and it is just hideous – but totally worth it, as finally now my family understand a bit about my illness and how to treat me appropriately and that encouraging me to do more things is less than helpful or kind. Wonderful. Am able to do a bit of painting again at the end of the year, in a limited way.
This is the year that I finally get my hands on some real solid M.E. info and facts about the importance of rest in M.E. I wish so much I had had it sooner, and feel that the lack of this knowledge (and my doctor’s lack of it) has kind of ruined my life. I start the AHG website (in a very small way) to try and get this information out to others that are newly ill. I can do maybe half an hour on the computer, lying down, a few times a week. But it is difficult.
Did a phone interview for an hour. Spent a week in a complete collapse and almost total blackness and bleakness recovering from it. Unbearable.
Midyear I spend a week in hospital for tests. It takes me 6 months to recover from the worst of it, just awful. I now become 100% housebound, instead of just very nearly housebound as I have been for years.
Computer time is up to about an hour a day, 3 or 4 days a week. Spend most of my time working on the AHG site. Heart symptoms are severe at times.
Computer time is up to about an hour a day, 4 or 5 days a week. Spend most of my time working on the AHG site. Heart symptoms are very severe and concerning, it feels like I am about to die some nights after I have over done it. I’m 99% bedbound. I can walk and stand just barely long enough to go to the toilet a few times, and the bathroom and to dress myself but that is about it. Maybe 10 minutes a day.
Towards the end of the year I step up my treatment plan (and take higher doses of CoQ10 and carnitine) and this lets me be upright about twice as long as previously which is great. I overhaul my whole treatment plan and start taking a few more things and trying more things with some minor successes.
Computer time is up to about 90 minutes a day, 4 or 5 days a week. Spend most of my time working on the AHG site. Still housebound, and maybe 98% bedbound.
As above. Founded the HFME website in May of this year.
I feel like sometime around 2008 or 2009 I reached the limit of how much I was going to improve by avoiding (most) overexertion alone and I needed to start experimenting with healing some of the damage I had done previously if I wanted to ever get better than a 2.5% level or so.
Getting my vitamin D level up from a very low level to an optimum one, and starting to take vitamin C to bowel tolerance (30 grams a day or more) really helped me turn a corner. They made a big difference, which was something I didn’t really know that supplements could do. I could do more and I just felt far more well. Relapses and cardiac events when they did happen were not as bad as previously which was such a relief.
Started to look at my whole supplement regime again, to see if anything else that helped me might help me even more if I took more of it (where appropriate). I also looked into the best forms of each vitamin to take. The extra ubiquinol, coenzymated B vitamins and magnesium and all the rest of it did help, and I used this new health and ability to do things to start reading lots of health books, something I had been far too ill to do previously.
My health has improved significantly again. Computer time is up to 2 hours most days, and sometimes 2 and a half hours. I am able to do a bit of cooking again which is so exciting, although it is mostly eggs and simple (healthy) smoothies, juices and desserts. I can stand up for half an hour easily if well rested and some days I stand for an hour without my feet turning the least bit blue or my heart and blood pressure becoming abnormal. Joy.
Visits with friends are far more enjoyable and for the first time in years I am well enough to be properly ‘present’ during the visit and not just hanging on for dear life and to stay conscious. My conversation is a bit more intelligent again and I feel a little bit of the old me creeping back, now that I am not just focused on mere survival.
I spent a lot of this year reading about health and nutrition and healing and slowing putting what I had learned into practice. I started focusing a lot more on the really basic and unsexy things that I hadn’t understood the importance of before (e.g. vitamin A and E and some of the trace minerals) and changing my diet quite a bit to include all sorts of cultured foods and other nutritious things. I start taking weekly or monthly FIR saunas in 2011 as well.
HHH website started in June.
I am doing a bit more than in 2011, but mostly I just feel a lot better and more well and more like my old self. My brain function is really improving. All sorts of things are coming back to me, such as my pre-illness handwriting! Every month or so I notice another un-symptom.
Some days I can do 3 or even 4 hours on the computer and feel better than I used to after doing my usual 90 minutes a few years ago. Some days I don’t even feel I need to use the computer timer, so I don’t, although I probably should. Complete resting is a bit of a struggle as now I don’t need to do it to get through the day...but I really should to give my body some spare resources for healing and to feel my most well. I need to watch less TV and read and type less, but it is very hard having gone without for so long. I am beyond over resting and doing nothing.
I want my improvements to speed up so I can get to my dreamed of 30% as soon as possible (yesterday would be nice), although I am still noticing new improvements each month. So long as this continues, I’ll feel and be very lucky.
Another big jump of improvement would be very welcome though...maybe if I rest a bit more and get my diet compliance up to 100% instead of just 97 or 98% I’ll get there...I hope. That is what I am working on now as I write this. So far so good!
2013 update: I’ve just reached the 9% mark I think, as of early-2013. I’m doing all sorts of things again I haven’t done in years.
I have had a few setbacks/new symptoms this last year or so with some new kidney and lymph issues which have stalled or slowed my M.E. improvement progress for a while. They started to get more serious around March or April this year. Not fun. It has taken me ages (until late October 2013) to work out finally that what I have causing these new problems over the last 18 months is a vitamin B12 deficiency. One severe enough to cause neurological and nerve damage and all sorts of new symptoms on top of my primary M.E. disease which is still stable/improving. Thank goodness it was caught now and not in a year or two when it would have been a whole lot worse.
I've written a short B12 information/My B12 story piece on this site for anyone interested on what symptoms I've had with this new issue, and how treatment is panning out and some links to great B12 deficiency books and websites. Just a few weeks into treatment and the results are amazing already (as are the big start-up reactions to it...eek!) and I'm really looking forward to feeling a lot better about 3 months from now!
To read details about my current diet and health regime see the My current diet/treatment plan page. To learn more about healing generally, please check out the entire HHH website!
Click here to say hello to me on Facebook using my HFME and HHH account!
I'm often posting new health information and links there and would always like to talk to like-minded people that are also big nutrition nerds!
A day in the life of severe M.E. by Jodi Bassett, on HFME
What it feels like to have M.E.: A personal M.E. symptom list and description of M.E. by Jodi Bassett, on HFME
M.E. vs MS: Similarities and differences by Jodi Bassett, on HFME
My M.E. case study by Jodi Bassett, on HFME
About the artist by Jodi Bassett, on AHG
Videos about M.E. by Jodi Bassett on YouTube
Note that the aim of this site is to provide a starting point for health and healing research for ill people; especially very overwhelmed and disabled ill people. This site provides recommendations, summaries and reviews of books but is not meant to be a replacement for actually reading some of these wonderful health books if the reader is at all well enough to do so. (Plus getting individualised advice from a doctor that is also an orthomolecular medicine expert if possible). There is no substitute for reading as many of these books as you can. The HHH site can only really hint at their full brilliance. The amount of insight, scientific references, logic, intelligence, compassion and experience in the recommended books will most likely amaze you. HHH aims to encourage people to do their own reading and learning, and to always make up their own minds. All content copyright Jodi Bassett 2006 - 2014.