I see your point, but try going to a Canadian hospital with this name, CFS, and if you need surgery, or any other serious procedure, you will see that there is no understanding at all of what it is like for the patient. In fact, the patient is often made worse, because precautions are not taken. I don't think there will be a name change, but I am quite upset that this ridiculous name was used in the first place.
If only we knew a time frame
- Thread starter Hopeful1976
- Start date
cfs started because of the arrogance of one man in charge at the cdc in 1986 you can find his name mentioned in one of dr Byron hides videos about m e . also ms went through a long period of disrespect as many other diseases including ulcers and lupus history is full of things being hampered or dismissed by authority protecting itself from change and the huge costs that inevitably brings about. rather strange because capitalism thrives on changes and advancement in knowledge.
Last edited:
Snowdrop
Rebel without a biscuit
- Messages
- 2,933
For more on the history of how we got here and why it's taken so long to even get the notice we now have see: https://www.meadvocacy.org/introducing_mary_dimmock_s_summary_thirty_years_of_disdain
It is just one more difficulty with this illness that there is not an end in sight. It adds to the burden of being ill. But I'd say now in 2018 there is less cause for despair, at least for most. Through the relentless dedication of a growing number of people across the globe things are starting to change. People outside the ME community are starting to listen. The more voices we add to the call for justice for people with ME the faster we'll see a different future.
Snowdrop
Rebel without a biscuit
- Messages
- 2,933
Don't know what part of the country you're in but in Ontario I was diagnosed with ME and that is the term used for billing and diagnostics.
Dr. Alison Bested, a Haematologist Pathologist who works with patients seen in the Environmental Health Clinic at Women’s College Hospital, sees patients with numerous complaints and very difficult diagnosis conditions. She uses K037, the billing code for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia. The diagnostic code for ME/CFS is 795 and the diagnostic code for FM is 729. All physicians can use these codes.
From this document:
http://ocfp.on.ca/docs/communications/june-6-2011.pdf?sfvrsn=3
I do agree about the name cfs though. And I expect it does still get used throughout Canada possibly in the media (though a rarety to be mentioned at all)
Apologies as I've gone off topic.
Well I am glad that in Ontario you are able to avoid the CFS term.
Alas, whenever I have used the ME term, ( in Quebec, Ontario, in Alberta) the physician would look at me and it was clear he/she did not understand what I was referring to, and I would quickly have to say: it is also known as CFS.
I know of Alison Bested and knew her clinic in Toronto.
I try very hard to use the term ME as often as I can get away with it.
I knew various other doctors in Toronto and they all used the term CFS.
It's an insulting humiliating degrading term which minimises the horror of this disabilng illness.
I am happy that you have avoided the stigma of the CFS name, I truly am. At least, that.
I live in Alberta. I'm pretty sure that I used the term CFS with my present GP, and said that if he thought it wasn't a real disease, he needed to check the latest research. He was actually fine with that. He can't do anything for it, but he hasn't dismissed it.
With previous doctors, I didn't know about ME/CFS at that time, so I said that it seemed to be some sort of chronic neuroinflammation. While I think it's a very good term, it didn't get me any help either.
I think that I lot of the doctors I had been to would have been dismissive if I used the term CFS...or ME. It's the disease that hasn't had any respect, not just the name. Doctors seem to hate things they don't have a test or treatment for.
With previous doctors, I didn't know about ME/CFS at that time, so I said that it seemed to be some sort of chronic neuroinflammation. While I think it's a very good term, it didn't get me any help either.
I think that I lot of the doctors I had been to would have been dismissive if I used the term CFS...or ME. It's the disease that hasn't had any respect, not just the name. Doctors seem to hate things they don't have a test or treatment for.
Hopeful1976
Senior Member
- Messages
- 346
I would love this to be the case! To have a real direction - to have real answers...
Intuition
Dance with ME
- Messages
- 26
- Location
- Melbourne, Australia
Offtopic here, but I think one of the reasons that many doctors are suspicious of this condition (lack of biomarkers aside) is that there are many individuals in society who uses the label as an excuse for personal gains. My medical practice was located in a low socioeconomic part of town, and I do see many patients who tell me they have CFS, diagnosed by another doctor elsewhere. These people have a long history of drug and alcohol abuse, unemployment, jail time, and personality disorders. They want me to sign disability forms for social security, but then tells me about their recent trip to Gold Coast. Surprisingly, I have yet to meet someone who presented with persisting fatigue after a virallike illness (until it happened to me). Thus I admit, I too was a bit suspicious about this disorder. Maybe some of these patients did truly have CFS, but a few bad apples may be spoiling the crate for us genuine sufferers.
Anyways, heres hoping that we find the breakthrough for this dreaded disease in 2018!
Anyways, heres hoping that we find the breakthrough for this dreaded disease in 2018!
alex3619
Senior Member
- Messages
- 13,810
- Location
- Logan, Queensland, Australia
I also think that far too often people presenting with chronic tiredness, or general fatigue, get told it might be CFS. They probably latch onto that far too readily. Most cases will be misdiagnoses. I think scepticism is understandable most of the time because doctors are well aware of regular post viral fatigue and that it typically resolves itself over some months. I also think that too many think ME is CFS and these are both prolonged chronic fatigue. Now who has what is not the main point here, its about diagnostic criteria. Few doctors look up and use them, and there are many poor criteria out there.
Most doctors are also unaware there are many tests that can be done, and five from 1954 or prior. These are not diagnostic (with caveats, some might be validated as diagnostic in time) but establish what is physically wrong to a large extent. To be fair one of those tests was probably not clinically viable till the 80s or so, and the another was only validated for ME/CFS 10 years ago. In fact the first was not validated till 1995, nobody bothered to do that. Yet these kinds of tests were sometimes used by doctors in the 80s at least, and established some kind of pathophysiology.
Those tests are the tilt table test, quantitative EEG, mass spectrometry, CPET and a sleep study. Of these only the sleep study is probably commonly used by doctors looking at fatigue states or related symptoms. Mass spec is still not clinically viable as its uncommon to find the equipment except at research hospitals from what I can tell. qEEG is commonly used for stroke patients, CPET for a variety of conditions and for athletes, and the TTT is specific for orthostatic intolerance. There are lots of more recent tests too.
I look to the history of other diseases for how and when attitudes change. Diagnostic testing is critical, but someone recently mentioned that treatments count too ... once reliable treatments are available most doctors want to use them, though the take up time can be one to two decades. This happened with MS and gastric ulcers.
Attitudes change when there are tests and treatments. Multiple tests are being investigated right now. Treatments are mostly still experimental or hypothetical at this point. No treatment that works has been approved via the appropriate medical processes, which would include the FDA in the US, and phase 3 clinical trials more generally .. yet.
Last edited:
Here in Northern Ireland the Government (Agriculture laboratories) get about £200 for each mass spectrometry test. The United Kingdom (UK) Government must test agriculture/food products, using mass spectrometry, as part of an European Union (EU) statutory program. The same EU statutory requirement applies to all EU countries. Any country which exports agriculture/food products to the EU etc. must do the testing (e.g. chicken from Vietnam). There's currently no definitive (mass spectrometry) ME/CFS test but if there is one in the future then there's no significant barrier regarding the testing/technology. I was a chemistry technician - there's plenty of us out there but no work (even at average industrial wage salaries).
If anyone in Government tells you mass spectrometry testing can't be delivered at affordable costs for ME/CFS then ask them how come it currently is i.e. where it's required to facilitate the export of agriculture/food products such as chicken/beef (£200 ish per test in wealthy countries such as the UK)?
alex3619
Senior Member
- Messages
- 13,810
- Location
- Logan, Queensland, Australia
I know mass spec is used in science in general, and testing, but when I try to find places that do it in a medical setting they all say they do not do this testing. Its not that we can't, its that we don't.
alex3619
Senior Member
- Messages
- 13,810
- Location
- Logan, Queensland, Australia
There might be soon. However this misses the main point, and that is mass spec finds hundreds of things wrong with us. It does not have to be diagnostic, but it does establish pathophysiology. I think the metabolomic studies use high throughput mass spec.
maybe some day
Senior Member
- Messages
- 776
- Location
- West coast
Seems like some possible good news end of this summer.
http://bit.ly/2HxCxRb
http://bit.ly/2HxCxRb
God bless Dr Davis! May he be strong and healthy, for his understanding of this nightmare is truly profound.
I was interested in the use of term circuit breaker because Dr Teitelbaum years and years ago, 20 or more, always said that some circuit breaker had come on.
ljimbo423
Senior Member
- Messages
- 4,705
- Location
- United States, New Hampshire
Interesting video, thanks for posting. At 4:44 Ron Davis says -
I think Ron and the other researchers are closing in on some very big answers!!
Jim
Last edited:
alex3619
Senior Member
- Messages
- 13,810
- Location
- Logan, Queensland, Australia
I think it likely this was discussed here: https://www.healthrising.org/blog/2018/04/03/a-metabolic-trap-for-chronic-fatigue-syndrome-me-cfs/
There is probably a thread on this.
Forgive the elementary question: but what does Dr Davis mean by "we have one primary circuit..."
What is meant by a circuit in the body?? Thanks folks.
ljimbo423
Senior Member
- Messages
- 4,705
- Location
- United States, New Hampshire
Ron calls it a "Central control circuit". My understanding of what he is saying is that it's some kind of metabolic Circuit.
Personally, I think there is some kind of locked immune system, dysfunctional mitochondrial circuit or feed-forward cycle.
Where the immune system causes inflammation, oxidative stress and mito. dysfunction and the dysfunctional mito. cause more oxidative stress, immune system activation and inflammation. Creating a self feeding cycle.
That's my 2 cents worth.
Jim
Last edited:
Sushi
Moderation Resource Albuquerque
- Messages
- 19,979
- Location
- Albuquerque
I think I was being simplistic. If e.g. Dr. Phair (OMF) turns up something (e.g. a blockage in a metabolic pathway) then you may end up with a mass spectrometry diagnostic test. At that stage the testing may use a less sensitive mass spectrometry i.e.rather than metabolomics mass spectrometry currently being used by Dr. Robert Naviaux (OMF) etc.