“With glowing hearts we see thee rise”
From the Canadian National Anthem
The tides are indeed rising for chronic fatigue syndrome (ME/CFS). Just three years ago, a grant application to create “an interactive and coherent Canadian network in ME/CFS” was turned down in a horrifying manner. The reviewer stated that there is “no evidence that CFS is a disease,” that it is most likely, instead, “an artifact of medical specialization,” that strikes “hard-driving” confrontational individuals who have a “high anxious” coping style. To top it off, the reviewer also wrongly stated that depression was an established risk factor for developing ME/CFS.
The Dark North: Canada Denies ME/CFS Grant Because Disease is Not Real
The grant application was denied. It was as if ME/CFS had been thrust back 30 years – and in a land which produced the Canadian Consensus and International Consensus Criteria. That of course, didn’t go over well with Canadian advocates who fought back harder than ever.
Since then, the Canadian government has done an about-face. It’s produced one international conference and made its first long-term commitment to ME/CFS – a $1.4 million, five-year research program. Plus, the Canadian Broadcasting Corporation (CBC) just came out with a stellar article and TV spot on ME/CFS (see below). Things are looking up in Canada.
I hope to find out how Canadian advocates turned that disaster of a review into an opportunity, but one thing is clear – having Alain Moreau on board – the researcher leading the effort – has made a major difference. Moreau and his collaborators put through two grant applications and Moreau chaired the Montreal Conference at the hospital he worked at, CHU Sainte-Justine. When the press wants to know something about ME/CFS, they go to Moreau. That’s pretty notable given that not so long ago Moreau didn’t know anything about ME/CFS.
Given that we want many more Moreaus to pop up, it’s instructive to ask how Moreau got involved. It essentially came from something very basic – people talking to other people about ME/CFS and asking for their help.
First, Christian Godbout, a Montreal patient, enrolled an influential doctor in our cause. That doctor asked the best researcher he knew of – Alain Moreau – to take a deeper look, and when Moreau did, he, as many researchers do, became intrigued. (For the most part, all you really need to get many researchers interested in this disease is to have them take a deeper look. Then the disease enrolls them.)
Alain Moreau (from CBC Canada – https://www.cbc.ca/news/canada/montreal/myalgic-encephalomyelitis-canada-icancme-1.5257415 )
ME/CFS really enrolled Moreau and here we are a couple of years later with Moreau leading a greatly expanded Canadian effort on ME/CFS.
The point is that you never know what effect your words or actions are going to have.
While the five-year $1.4 million Canadian effort funded by the Canadian Institutes of Health Research (CIHR) isn’t a huge amount of money, it represents a tremendous step forward for a country which is emerging from a pretty long and dark winter.
For years, Health Canada – the voice of Canadian Health Care – recommended psychotherapy and exercise for ME/CFS. (That webpage was ditched in February of this year.) The fact that the reviewer mentioned earlier felt secure enough to publicly spew his or her antediluvian opinions meant that he/she was probably not alone.
Common sense seems to be prevailing, though. Earlier this year, the Canadian Minster of Health, Ginette Petitpas Taylor, embraced ME/CFS research stating:
“Our government is proud to support the work of researchers pursuing improved quality of life for people living with myalgic encephalomyelitis, their families and caregivers. With this investment, we will advance research into ME, work towards developing testing and treatment options, better medical education, and, ultimately, better help for patients.” The Honourable Ginette Petitpas Taylor, Minister of Health
As Moreau noted, it’s best to think of the $1.4 million as the beginning of something rather than the end. It’s a start – the first beachhead ME/CFS has established in the Canadian research funding game. With the CIHR devoting almost $500 million a year to medical research funding it certainly has room to grow. Who knows what time will bring?
“This $1.4 million is just the beginning of something. We know we need much more money, for sure, but yesterday’s announcement was a big step for all of us.” Moreau
Media Support
The effort in Canada is being substantially helped by another important partner – the media. The Canadian Broadcasting Corporation’s Aug, 2019 article on the new research effort got quickly to the gist of the matter by contrasting the disease’s prevalence with how little funding it is getting.
The short but powerful video and the longer article that went online yesterday went further. The video featured a teacher whose years of crushing fatigue and near paralysis were dismissed by doctors as depression. It clearly stated that psychotherapy and exercise were not effective, and noted the efforts by Ron Davis to find a diagnostic biomarker. It’s a very welcome video.
The article, “After long-awaited recognition, serious research begins on chronic fatigue syndrome“, was even better. It noted that, with 580,000 Canadians suffering from the disease, the Canadian government had lagged behind in funding and featured Ron Davis and his ill son, Whitney.
The first Moreau grant was demolished by a hostile reviewer but the second was successful and Canada is beginning its first extended ME/CFS research effort.
None of this has taken place in a vacuum. The CBC cited the Institute of Medicine report that paved the way for the NIH-funded ME/CFS research centers. The NIH’s reinvigoration of ME/CFS research and the existence of the new centers surely bolstered the grant for the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network, or ICanCME – which will reportedly be collaborating with the NIH centers.
It’s all part of the expanding “arc of progress” for ME/CFS that Carol Head talked about ME/CFS has has many unmet needs – so many as to seem insurmountable at times, but then all works of great endeavor seem impossible at times. Better to focus, as Carol Head suggested, on the arc of progress – which with the new funding and excellent reception that ME/CFS is being given in the Canadian media, is now upwards.
It’s about time! Hopefully, it’s the beginning of more funding and research in Canada.
So happy that we are finally being recognized in our own Country!!!
How can I access the video mentioned in this article? Thank you.
It should be clickable. Did you try clicking on it?
Go Canada! Great write up Cort!
It’s good to see this response. I just hope the momentum continues. It feels like we are continually getting our hopes raised, only to have them dashed over and over. I’m trying to be optimistic but it’s hard sometimes. Having said that, I greatly appreciate all the work you put into keeping us informed, Cort. Thank you.
I think its most practical, healthy, efficient and effective to keep our eyes on the “arc” of progress we are making: the the new funding in Canada, the increased funding in the U.S., the new strategic plan being developed (one was just developed to great acclaim for Lyme disease by the way – http://simmaronresearch.com/2019/10/better-lyme-diagnostic-nih-strategic-plan/ ), our greatly accelerated and increasingly effective advocacy efforts, the movement of the CDC on their website, the hopefully dwindling interest in the UK and the Netherlands in CBT/GET, etc.
Keep the trajectory of arc moving upwards and who knows what we will accomplish.
Hi. Previously I sent an email to Cort but he hasn’t responded yet.
These 2 clips from CBC CANADA NATIONAL NEWS just started to address our problems: (Where they got the # is a mystery)
PLS WATCH:
https://www.cbc.ca/news/health/chronic-fatigue-recognition-research-1.5330712
https://www.cbc.ca/news/canada/montreal/myalgic-encephalomyelitis-canada-icancme-1.5257415
None the less I try to keep up to date & notice that CDC-Atlanta
(The worlds most foremost & respected site) has dramatically changed their front page about ME/CFS in the last 6 (?) months…
https://www.cdc.gov/me-cfs/inex.html
It appears that we may finally be getting the attention we need…..
The figure of 580,000 comes from Statistics Canada’s Canadian Community Health Survey (“CCHS”), annual data for 2016, most recently officially cited by the Minister of Health in announcing the ICanCME Network funding in August, as well as by the Canadian Institutes of Health Research news release of the event. (See https://www.canada.ca/en/institutes-health-research/news/2019/08/government-of-canada-invests-14m-in-biomedical-research-to-improve-the-quality-of-life-of-people-living-with-myalgic-encephalomyelitis.html)
The desired microdata set for 2016 is unfortunately not currently publicly available, to the best of my knowledge (having recently searched exhaustively for it following the August news conference referenced above); however some earlier years’ datasets are. And while some high level cautionary statements re interpretation of CCHS results for 2015 and 2016 annual data exist due to minor methodological changes to the study, the CFS question presentation to respondents remained the same, according to the interviewer manuals I reviewed.
Remarkably, an epidemic increase not accounted for in the minor methodological changes, occurred between 2014 and 2015, with a still significant increase the following year too: We went from just over 400,000 cases in 2014, to just over 560,000 in 2015 to 581,600 in 2016, the latest year available.
Margaret Parlour, the National ME-FM Action Network’s expert analyst, wrote a set of articles presenting and commenting on the CCHS findings in a special issue of their magazine called, “Quest,” in fall 2017. She outlines and discusses 2014 and earlier, plus 2015 and 2016 results too. For summary of the Canadian incidence data over time, you cannot beat her excellent work; I highly recommend reading it. (See
http://mefmaction.com/images/stories/quest_newsletters/Quest112.pdf)
Thanks so much Valerie – looking forward to read Margaret’s reports.
Thank you Valerie,
That article is very comprehensive and a keeper. It can be extremely helpful when trying to explain to the people around us why we spend so much time in bead and have to rest even after taking a shower before doing anything else.
Sorry about that Martin. I am behind in my emails again! My bad – especially since they would have informed this article.
hi, When I am able to read once in a while, I am surprised to see you are all able to be up to date, read, comprehend, and write. I can not anymore. Are you all on medications? is that why you have normal days? within one year my ability has been reduced by 40%. can anyone tell me what will come after this?
It is certainly an arc of progress. However the dollar amounts are tiny and miniscule on a per capita basis.
It makes our government look generous. Recent funding off the back of our South Australian advocates request for a targeted research grant is $3 million with another 1.4 million to look at the economic impact of the disease. Even that is tiny compared to other diseases.
I didn’t mean to make the impression that Canada is being generous. Canada is not being generous at all. As mentioned in the post Canada’s biomedical budget (Thanks for Margaret Parlor for that) is 492 million. It has a long way to go.
Canada is, however, finally moving in the right direction. It has for the first time I believe committed to a small but long term ME/CFS funding effort. This is more a congratulations to the Canadian advocates who got Canada onto the ME/CFS funding train. May it grow and grow.
Hooray for Canada!
I’m not sure what the official stance on ME/CFS is in Ireland, so I emailed a local politician to ask her to help me raise awareness of the illness, a couple of days ago.
I’ve now forwarded this article, the email I received from the Open Medicine Foundation re their Symposium and an article from Solve M. E. about Invisible Disabilities to the same politician.
Maybe something will come from it.
Thanks for keeping us informed.
Great work! It’s acts like this that move us forward. Who knows how many it takes but if you do enough of them they will touch the right person and the earth will start to move. 🙂
Years ago I lost the best doctor for ME/Fibromyalgia to Canada.
so Canada, now has the wonderful Dr. Ian Hyams as well as funding.
Very jealous down here in South Africa.
Yes Dr Hyams is one of the most knowledgeable experts on ME/CFS and I’ve been so fortunate to have had him as my specialist x 5-6 years. He diagnosed me initially after years of unsatisfied answers and harmful advice from so many others. I was down to 82 pounds and in horrific pain and his advice and belief in me turned things around. Due to his expertise he is a very busy man. Cheers
Congratulations and what a great recommendation for an ME/CFS specialist.
I’m sorry for your loss in S. Africa. It is sure hard to find docs when one has M.E. I live in Canada but it’s a huge country; I am located about 3000 miles from Dr Hyams. I sure wish there was a single doc in Ontario who specializes in M.E. If anyone here knows of a doc, please post!
Thank you Cort for writing this article. It’s absolutely wonderful to now be seeing positive steps in ME research and in the media And government support.
I have the honour of being asked to be a member of the ICanCME team. We kick off the network on Oct 28th so more info can be shared after the meeting. Perhaps you can do a 2nd article.
I have great confidence that we are going to see good promising results from the Canadian network. It’s being led by Dr Alain Moreau who is brilliant, a strong leader, and “loves” the illness. His passion for it is contagious. He is assembling a strong team that will succeed.
I think this effort should bring hope to patients.
I’m planning my annual webinar with Dr Moreau Approx late Nov/early Dec. I hope people can tune in to hear more about this new initiative. Still have to confirm the date. Watch http://www.facebook.com/ActionCIND for updates.
All the best
Alison Rae
Board Chair and CEO
Action CIND
Thanks so much Alison. I loved visiting Montreal during the conference and I’ve always been impressed by Dr. Moreau’s passion. I’m not surprised that he’s assembled a strong team. I look forward to hearing more about what’s next. 🙂
Cort thank you so much for this story. A huge shout out to Dr. Karim Khan of the Canadian Institute of Health Research who has been our champion after meeting with patients at the Montreal Conference only last year. His efforts with the brilliant patients in the ICanCME team (like Alison Rae, Sabrina Poirier and Christiane Garcia to name a few) have been a battering ram for action. ?
Thanks for acknowledging Dr. Khan for his good work. Nice to hear about another champion – particularly one from inside the CIHR. We have one hear in Vicky Whittemore.
Moreau still doesn’t know anything about ME/CFS. Nobody does. Because it doesn’t exist.
The reviewer was right about CFS, too. CFS is nothing. An invention by a psychiatrist with a brain tumor who was afraid to get himself examined, so he made up a diagnosis to describe his own symptoms.
Meanwhile, there is still zero funding for research into myalgic encephalomyelitis, a real disease. Thanks to fake ‘ME/CFS’ advocates who get paid to spread false information.
Whats the real difference between “myalgic encephalomyelitis” and ME/CFS? If an individual is symptomatic, there is nothing “fake” about it. Its a matter of the root of the issues occurring. You can say that illness isnt whats wrong with the body, but the bodys “reactive” response, that you can validate. You can also say that chronic illness is a bad habit of the brain as well.
But fake?….Not on this forum at-least!
Dan, what do you mean by ‘ME/CFS’? It doesn’t appear in any classification of diseases.
I don’t know if it matters to you Guido but one thing I forgot to mention is that the last couple of CBC articles referred to the disease as myalgic encephalomyelitis.
And which ‘the disease’ would that be, Cort?
Guido, I don’t believe CFS exists either. CFS should be dropped, and other monikers should be used in its place, such as SAQH “Stratified Access to Quality Healthcare”, BLDD “Busy and Lazy Doctor Disorder”, which are often seen as the cause of IUPS “Ignored and Underserved Patient Syndrome”.
Dear Cort,
Thank you so very much for this article. I was so happy to hear that there was a conference in Montréal, were I live, but I knew I wouldn’t have the energy to make it there. Reading your report felt like I had been there.
About the slap in the face Canadian ME/CFS sufferers got some time ago, let’s remember that we were then under a government who made drastic cuts in funding scientific research, and whose leaders were self proclaimed creationists.
In a more tongue in cheek style : The French claimed Canada for the King of France in 1534. Most of the French colonizers settled in Nouvelle-France between 1604 and 1715. Our gene pool is pretty limited. 🙂
In 1763, the megalomaniac Louis the XV was forced to put an end to the Seven Years’ War and signed the Treaty of Paris, where he ceded most of Nouvelle-France to the Brits, without an ounce of remorse. He who was happy to get rid of what Voltaire called “quelques arpents de neige” (a few acres of snow) with the treaty of Paris in 1763, as his predecessor on the throne and great-grand-father, Louis the XIV, had left France’s finances in a desolate state.
Us Frenchies remained in the cold to fend for ourselves and fondly keep alive the speech of centuries of yore. We are certainly not going to apologize to anyone born in Europ for our 17th century’s intonations.
The other megalomaniac, Napoleon, was happy to cede the rest, Louisiana, which covered more than a third of the current U.S.A.,to the Americans, to finance his crazy wars.
So, dear friends, whatever your mother tongue is, don’t ever let a Castilian tell a Californian that his Spanish is not proper, or a Roman tell a New-Yorker that his Italian is as rudimental as in Southern Italy. I can imitate the horribly vulgar Parisian street accent whenever I want, where those who spit in our face what they erroneous feel is their superior command of French, could never truly speak Quebecois.
My son was brought up in our Montreal public schools, where he picked-up a Quebecois accent whose deep intonations sometimes frightened me. Yet, he has a PhD in Nuclear Physics, was a MIT Fellow and was recently offered a research chair and a tenure in a major French University. I’d rather not identify the University, because it’s too small a world.
I don’t think it’s snobbish of me to ask a taxi driver, who chose to immigrate to Montreal because, obviously, it offered him a better living standard than he could achieve in France, where he gets the nerve to insult the people who created, with centuries of hardship and then, picking themselves up by they boot straps with a lot of creativity, the country where he felt good enough to uproot himself from his mother land.
And, I’m sure that my second language, English, is far superior to his. So there!
I remember telling a Aussie friend, 35 years ago, that I had a hard time understanding him, because of his accent. He answerer right back, about my then pretty French drenched English accent, that he had a hard time understanding me also. It was so true, without being insulting, that we laughed. Wouldn’t you believe it, we are still the best of friends. Mind you, my spoken English improved and his became closer to a Canado/British accent. This is how people from all over become a nation.
Now, about ME. I finally got some form of treatment, if maybe not the best one, who knows, because I was lucky enough to find a new family practitioner eight years ago, a young doctor. I brought a copy of the ME/CFS Canadian Consensus and he took me seriously. He did point out that he could not read through the whole thing but that over time, we could explore testing to eliminate possible causes, and prescribe medication to boost my energy. I can’t express enough how grateful I got my hands on that document.
This is why I find it so encouraging that finally, Canada has become a host to researchers. I don’t know that I’m young enough to participate in research protocols, but I certainly will follow the results.
Cheers, y’all 🙂
I smiled throughout reading your post Genevieve. You brightened my day. Merci beaucoup. Bonne chance mon ami.
Woo- woo. A proud French Canadian 🙂 I must ask – I love Moreau’s accent – particularly the way he says “heusss-boiunnnnnd” :). Is that Quebecois?
I must say with my partner up in Toronto and after my visit to Ottawa and then to MonTReal, I wish the blunted American invasion of Canada had gone better. 🙂
To clue some people into the mysterious Uber driver he popped up the blog on the Montreal Conference
https://www.healthrising.org/blog/2018/05/16/montreal-me-cfs-i-metabolism-the-main-matter-more-exercise-issues-plus-bad-brain-motor/
“I thought I was in Paris, so much French was being spoken. The conversations in the cafes, on the streets, in the subways – everywhere – were in French. It turns out that with its 4,000,000 plus residents, Montreal is the second largest French speaking city in the world. I couldn’t understand a word anyone was saying but the beauty of the language was evident. (Thankfully, they quickly switch to English when needed.)
“My Parisian Uber driver told me, however, that Canadian French is not correct French at all – it is, he sniffed, anglicized French which he had trouble understanding at first. French, he assured me, is the easiest language to learn because, in contrast to English, it actually has rules that it follows. Plus, in French you actually say all the letters. He demonstrated that by pronouncing Toronto the way it should be pronounced (Tor-on-To) and then the way he said Torontonians pronounce it (Tor-an-do). (A Torontonian informs me the pronunciation is more like “tronno”). He also informed me, that because the French were first on the green and gentle isle that is England, English is actually French spoken poorly. ?”
Canadians stand up for Gay rights and Gay marriage and women’s rights etc.and other rights not popular in many countries. I would like to see us take some leadership on ME/CFS rights. It is the right thing to do now that a candle has been lit by Ron Davis.
I just read this “ME Association Medical adviser, Dr Charles Shepherd, said: ‘The ME
Association is delighted to announce that our Ramsay Research Fund has
been able to make three major research grants totalling nearly 200,000
pounds.”
Go Brits!
Dr Charles Shepherd was also appointed to the committee that is working on a new set of NICE (National Institute for Health and Care Excellence) guidelines on ME/CFS in the UK.
So let’s hope that’ll be the last we see of CBT and Graded Exercise Therapy. However CBT and GET are still currently on the NHS (National Health Service) website as part of the treatment for ME/CFS.
As I live in Ireland I looked to see what the HSE (Health Service Executive) say about ME/CFS. My search ended with No Result. Then I found a recommendation to look to the NHS and where does that end up? CBT and GET amongst other things.
However in my searching I also came across EUROMENE – European ME Network.
http://www.euromene.eu
They are trying to build networks to share information, encourage research, develop more understanding and evaluate the cost of ME/CFS etc. Many European countries are involved.
I hadn’t heard of it before.
I have been thinking – now possible as my life is less about sheer daily survival and my brain is working better (massive achievement for me) and I’m not asleep! ☺️
So, with this fabulous opportunity for action, I am beginning to see a gap emerging between the developments and collaborations in research and individuals like me in rural Ireland.
Raeka Aiyar PhD, the Open Medicine Foundation’s Symposium Moderator said that she realised that those working in the area are in a ‘bubble’ and that people outside of this may be less aware of what’s going on in the field.
However I believe decent researchers are having a tough enough time trying to secure funding and develop their ideas to also be responsible for raising awareness on a worldwide scale, to the extent that GP’s, MD’s, PCP’s (or whatever they are called in each country) are sufficiently knowledgeable to at least validate and acknowledge that ME/CFS is a real, devastating illness.
So, what brought me to EUROMENE yesterday, was a memory of Trinity College Dublin, I believe, being linked to researchers in Australia.
That search took me to Assistant Professor of Economics at Trinity, Dominic Trepel, who has become interested in ME/CFS and is a member of EUROMENE. So, amongst others it seems, is Professor Jonas Bergquist.
So, personally, I am existing in a void in terms of the lack of acknowledgement that I even have a physiological/immunological/metabolic (?) illness. I can see how that has occurred, as nothing really shows on the numerous tests I have had done.
I had so many appointments with different specialties, that I did look like a hyperchondriac, the ‘worried well’, a case of middle aged womanitis ?
So I’ve decided that my focus with the politician will be to try to familiarise her with the current level of understanding in research circles. That well respected Universities around the world are involved.
As an individual I am easy to dismiss but there seems to be a growing number of highly prestigious people involved, who I presume, are not going to invest their time, energy and career in an area that doesn’t actually exist.
Even though no one has found a cure – even acceptance that I struggle on a daily basis to maintain an ability to survive on my own, with my son, would be tremendous. My family are on a spectrum from being sceptical to bullying. I haven’t spoken to my sister for over two years, since she told me she thought I had a mental health problem. My younger brother (her twin) joined in earlier this year, again with the mental health angle. I’ve had to largely cut them out of my life. This is an example of my everyday experience with this illness and I suspect I’m not alone…
Anyway I shall continue with my campaign and if this politician won’t listen I’ll just carry on until I find one who will. There is a part of me that has the mentality of a Jack Russell terrier dog. Anyone who knows their dogs will know what I mean!
Your 100% correct that:
“ME/CFS is a real, devastating illness.”
Im not sure trying to attract a politician or two to try to, enhance awareness is the way to go however, at least not in this day and age where things can change and shift so easily and frequently, where threes so much control over how people feel and react to news. I mean they tried this with mercury, cell-phones, it doesnt matter, its too controlled.
Usually the research that goes in is so that tech and drug companies can monopolize their solutions. And their solutions usually dont involve the root of the issue. Thats usually what happens. im not saying, im not saying some research isnt valuable, but for a complication that presents different from person to person…..theres something to be said about that.
ME/CFS is going to vary from individual to individual from a symptom standpoint, but since we are all human, there are some foundational elements that need to be looked at first, before understanding causation.
We can’t rely on people in office; I admire your tenacity of a Jack Russell terrier, that’s fantastic. I don’t know your current status/situation either, but please refer to my recent comments I have established on the
What “Phantom Nasal Congestion” May Tell Us About ME/CFS and Fibromyalgia
article, to see if perhaps you fall under this category, for starters.
Root issues, im noticing there’s a lot of technical information on here, as it relates to all different kinds of theories and what not. At the end of the day, the Entire body has to be taken into consideration, and a lab test is one of many tools. Think internally, not exponentially. Lab results show evidence as it pertains to what is being evaluated.
Same thing with SNPS, something has to Activate those SNPs for them to function a certain way. If you have a burden of heavy metals inside the body, and you’re exposed to electromagnetic frequencies each and every day, you’re going to feel fatigue. The metals act as antennae. We see it with the Lyme spirochete also; the spirochete is more destructive (remember, non-pathogenic, it just wreaks havoc on the immune system, if the immune system is already compromised, and it doesn’t take much) with EMF and causes more symptoms. So if there are heavy metals inside the body, This is going to cause nervous system dysfunction and immune system dysfunction. Fatigue and pain will result. It’s a simple as that.
Couple that with the food you eat, what we are exposed to on a daily basis in the air we breathe.
How much research do we need to know we live in a toxic environment, and trying to prove certain anomalies through tests is the answer? Western medicine wasn’t designed for FM/CFS sufferers. And spending time trying to integrate into that paradigm that, well…..thats not my call, just my opinion.
Best,
Dan
Thanks Dan,
I’ll re-read your comments on the ‘Phantom Nasal Congestion’ article.
I have a trial and error approach – trying to work out what food I need to avoid and what I need to eat and what supplements seem to help. Improving my quality of sleep has also helped.
I have not been ‘helped’ by my visits to the various doctor’s I have seen but they have ruled out other conditions.
My reason for approaching the politician, is for help in raising awareness within the Health Service, that CBT and GET are potentially harming people.
Most people go to their doctor for help, as I did. It did take me a good few years to fully take responsibility for my health (fear motivated me after a very bad reaction to eating maize starch, three days in a row – light mayonnaise – my blood sugar seemed to drop very low).
I have also read, watched and listened to many of the Functional Medicine doctors – they helped.
However I do visit my GP for other health issues and believe it would be less demoralising if they actually realised I have a very complicated illness, I am trying my best to manage and not suspect that I have emotional issues.
I learn things from listening to the ME/CFS researchers brought together by the OMF or Dr Nancy Klimas and Dan Neuffer and so on.
For most of the 12 years I’ve been battling with health issues, I didn’t even really know about ME/CFS. I’ve made more headway now that I’ve begun to see more of a pattern/system at work. I see my immune system as a military dictatorship. However if I follow its ‘guidance’ my health improves. If I step off the very narrow path it allows, I’m in big trouble.
I’m trying to understand other aspects too. I do this myself – it’s very obvious if I get things wrong or right.
So this is a long winded way of saying I get your point – the medical profession have little to offer me. However I think if doctor’s at least acknowledged that the illness has a physiological basis and is not psychological/psychiatric, then that would be a start.
Anyway I appreciate your input
Tracey
I’ve also learnt masses on this website; reading the articles and the comments. However because I had no idea any of this existed I didn’t realise I could access all this information and the support from others.
I feel very lucky I’ve found this ME/CFS world (not CBT/GET – I wouldn’t have done that anyway) and believe there are many isolated people out there who could also benefit, if only they had the knowledge.
Thank you Tracey,
I think You’ve done a fantastic job in this. The only other recommendation Id make at this point as it relates to health is to check out dadamo.com
I think he is a physician that was way ahead of everyone else as it relates to epigenetics and generative medicine, but thankfully you have the ability to decide that for yourself 🙂
Thanks again for your feedback, its nice to converse with you,
Dan
Its stupid ass articles like with the link im about to provide that give people false hope:
https://www.inverse.com/article/60433-what-causes-anxiety-symptoms?utm_source=pocket-newtab
In a series of mouse experiments, scientists at the University of Utah noted that a “lineage” of cells called Hoxb8 microglia had specific effects on anxiety. In mice with dysfunctional Hoxb8 microglia cells, they nervously over-groomed and displayed symptoms similar to human anxiety and obsessive compulsive disorder, but when these cells were functioning normally, the symptoms abated.
Dimitri Traenkner, Ph.D., assistant professor of biology at the University of Utah, tells Inverse the finding offers biological answer for why people with acute anxiety feel the way they do. The identification of these cells is a big step forward for developing new anxiety treatments.
“For people suffering from anxiety, this news should give hope. Maybe simply because it might not be your fault if you are anxious. There is an underlying disease mechanism,” Traenkner says.
Well no shit……theres always a MECHANISM with any disparity. Its not for this moron to decide who is or isnt at “fault” for ones anxiety either. Its way more complicated than that.
So they want to make money, not by treating the patient as a whole entity, but by treating the cell or the mechanism involved with what they deem as “anxiety.”
Yup, western medicine, sign on the dotted line, well take care of all your problems.
Best,
Dan
Cort, apparently Baraniuk has just presented some interesting research on changes in the brain in CFS versus GWI, will you do a piece on that? Thanks for all your work.
c’mon y’all…ME/FM/cfs… A Rose by any Other Name/the elephant in the room– it’s all ‘Epstein-Barr Virus (EBV), aka the virus behind Mono.’
95% of the population carries EBV.
One usually develops Mononucleosis later in life if they were not exposed to EBV at a very young age.
Re-activated EBV can become chronic, this virus can stay dormant for most of a persons life.
First post here after following on and off for many years. I am 76 and have struggled most of my life with CFS …. many ups and downs that you have all experienced. Sheer stubbornness helps. Thanks Cort and all who contribute here as one still needs hope. My own daughter is an ER Physician who does not believe our malady exists. Doctors are commonly like that. They need peer studies and proof compounded before many will even consider the reality of what we all suffer. I site pain management as the hallmark of that. Nice to come here and read all the information as it is psychologically edifying and silently supportive.