As I have explained elsewhere, I no longer agree with the definition of ME/CFS and I am not sure that having it as a diagnosis is particularly useful. Once upon a time I was among the chronically exhausted (and that was just the tip of a huge iceberg of symptoms), and I would have given anything to gain some recognition from the medical community, and some respect for my suffering.
What I learned the hard way was that respect and recognition didn’t make me feel better, and I WANTED to get better, with everything I had. Of course a diagnosis was infinitely preferable to the “it’s all in your head” rap, and might have helped financially if the social system had recognised it, but it didn’t help me one bit towards healing.
After many years, and going into remission, I have come to the unpopular conclusion that what goes by the name of ME/CFS and fibromyalgia is simply a cluster of symptoms potentially caused by a fairly large number of (hopefully treatable) conditions, and that when someone labels their disease as ME/CFS or fibromyalgia or another “incurable” problem , that may may stop them from looking for the actual cause,.
The problem is that those other conditions, such as chronic infections, heavy metal poisoning, reactions to environmental pollution, gut dysbiosis etc are ALSO not recognised by conventional medicine. So, in order to get a better, more hopeful diagnosis, one needs to take a leap (of faith?) and jump over to the other side, where functional/integrative medicine await.
Not many people are open to do that, even if conventional medicine has nothing to offer. Taking that leap of faith means ignoring “authoritative” advice (for example this official source that for some reason recommends a pro-inflammatory diet to ME/CFS sufferers, shame on them). We are raised to respect authority, and it takes a deep mental shift to “trespass” into unknown territory. The medical authority also tells us that they are the ONLY authority. But I digress.
This is just my personal opinion, based on my personal experience (I was a textbook case of ME/CFS, from the onset to the smallest symptoms, and yet it was something completely different) and by 18 years of reading people’s stories, correction, reading stories of RECOVERY, the only stories that pushed me to keep going.
When one is left with the very limited devices (with regards to chronic illness, that is) of conventional medicine, a diagnosis of ME/CFS may seem to be a godsend, because at least SOME doctors have heard of it. But, once again, what is the utility of being diagnosed with an incurable disease when possibly the same symptoms can be explained in different words, words that re-contextualize the same illness in a way that allows for action and hope?
Nonetheless I’d like to share the best and most informative sources about ME/CFS I have come across over the years, in case that is your diagnosis and you want to stick with it.
While reviewing all the old links I had for this post, I discovered with great joy that in the last years even the most hard core defenders of ME/CFS as a distinct illness have begun to share information about potential causes beyond the hypothetical retrovirus that has been taking the main stage for the past 30+ years. In a way, that hypothesis was correct, because many chronic infections still go undiagnosed, but it’s unlikely in my view that the same infection affects everyone. Anyway, the important thing is that the general attitude is slowly changing from resignation to curiosity and openness, and hope.
Without further ado, this is the list my favourite sources about ME/CFS.
1. PhoenixRising.me
The first item on this list is the incredible forum and community of PhoenixRising, one of the first sources in the history of ME/CFS, now offering a pretty comprehensive corpus of information, including a very useful roadmap for testing and treatment.
I found some welcome updates since some years ago: the information provided seems to cover a wide range of topics, including mold toxicity and chronic infections, but I feel personally offended that the main causes behind my ME/CFS, amalgam poisoning and neurological damage from benzodiazepines on top of various “invisible” chronic infections, are simply not mentioned. Other potential causes I didn’t see in the list were Multiple Chemical Sensitivity and EMF sensitivity (both now even recognised as physical diseases in several countries around the world). At least there are some mentions of them in the forum. And of course parasites are missing, no mention of parasites anywhere.
All things considered, the website does a great job of bringing people together. In the early 2000s this project was a light in the fog for ME/CFS sufferers (also because there was nothing else), and clearly the authors tried to keep up with the times and seem more open to blurring the lines between ME.CFS and other often undiagnosed illnesses such as Lyme disease.
2. HealthRising.org is another great website and welcoming community, from the same creator, Cort Johnson, a relentless patient advocate for many years. This website’s scope has now expanded to include Fibromyalgia and now Long Covid.
Personally I feel that the limitation of both sources is that they only feature sources from conventional medicine. In HealthRising’s Forum there is a menu item titled Alternative medicine, that seems to be the only concession. And of course close to zero references to diet, as usual.
3. Dr Sarah Myhill’s website: Dr Myhill is a naturopathic doctor who has been a ME/CFS advocate for many years and has treated a large number of patients. I discovered her website I believe in 2008 or 2009, and since then and now it has become a veritable trove of information. Dr Myhill in the last years has began supporting a Paleo-Keto diet approach, and has published several books about ME/CFS and natural medicine.
4. if you want an overview of the social dynamics of ME/CFS and the policies behind the systematic mistreatment of this unfortunate segment of the population, check out this law-oriented blog by Valerie Eliot Smith.
Valerie is a lawyer with long-term ME/CFS, and among other things she has been conducting a years- long study on the NICE guidelines, (which are not nice at all! NICE stands for National Institute for health and Care Excellence in the UK), that is, the guidelines issued in 2007 by the healthcare system to General Practitioners explaining them how to treat ME/CFS.,
These guidelines are basically homicidal, because they include the enforcement of Graded Exercise Therapy (GET), and offered Cognitive Behavioural Therapy as a primary treatment (!) for what we all know is a very physical illness. This approach directly caused the untimely death of the medical system’s most famous ME/CFS victim, Sophia Mirza, in 2005, and allowed the abuse of countless others.
Valerie demonstrates, as only a lawyer can, how the research on which the guidelines were based was deeply flawed and failed to prove any kind of effectiveness for those “treatments” in relation to ME/CFS.
Those guidelines have been amended in 2021, as this article explains in simple terms. In reality not much has changed, but it’s a little step in the right direction. I believe that Valerie’s work has been an important contribution to this effect. Whatever the cause of the disease, ME/CFS patients are treated horribly, and it’s wonderful that someone like Valerie can act in a way that directly affects policies. Prepare for very precise, compelling articles.
5. If you wish to become an activist, then the #MillionsMissing initiative is for you. In 2016 a group of activists organised a protest event that has since become a very successful formula. Manifesters will bring the shoes of the many sufferers who had no opportunity (well, energy) to participate and lay the shoes on the ground, visualising their absence (from the protest, and from Life). The organisation has been very vocal since and brought quite a lot of visibility to this cause.
Personally, I am not involved in this kind of activism anymore, because I think ME/CFS is just one of the many faces of modern diseases caused by man-made changes to the environment, by which I mean any illness ,but most commonly infections or autoimmune diseases, triggered by the increasing amount of toxins in air, water, food, households and medications. That is a completely different activist group, that I imagine goes under the umbrella term of “environmental illness”.
Nonetheless, visibility is extremely important, so all my admiration to this association for organizing such effective protests and for knowing how to reach the media.
6. Another source that was popular years ago is ME-pedia, and this one hasn’t aged too well. The list of available treatments is dismal in its paucity, and it seems to disregard any kind of contributing factor to ME/CFS, let alone other underlying causes. I mention it because the website is connected to an important patient organisation, MEAction (the same organisation behind the #MillionsMissing campaigns). It is really depressing that their website is missing so much important information.
I know that this little rant of mine is going to annoy quite a few readers, I wrote it anyway because it just breaks my heart to see the ME/CFS community so devoid of hope. I believe than even if not everyone’s situation is completely resolvable , everyone CAN improve, and a first step is (at least between us, the GP doesn’t need to know, they wouldn’t understand anyway) to try and call the disease by some of the many possible names – chronic infections, adrenal fatigue, heavy metal poisoning, mold toxicity, EMF sensitivity, undiagnosed hormonal imbalance, cervical instability, leaky gut, food sensitivities, just to mention a few. The way many ME/CFS sufferers share the same prejudices that stop conventional doctors from helping people is just tragic.
