I do agree that these "Top Drs" have not published all or enough of their findings though many have published papers.
By not publishing findings I agree it is a diservice to the ME community as a whole.
That being said you have in the US 836,000 to 2.5 million and possibly up to 4 million US citizens that supposedly have ME but you only have 10 to 15 actually specialists to try to treat it. I think this is a major problem.
Most of these Drs are full or have waitlists over 6 months to a year. These Drs are really part of a small minority that try to treat the disease.
Knowing this, cause your a retired Dr, wouldnt it make it extremely difficult to research, treat, apply for funding and do clinical trials when there are only so many hours in a day? I dont know it just seems like its very difficult to do all this and most like Klimas and Bested said only spending 15 to 30 mins is inadequate amount of time to get the real picture of the illness and whats happening/dysfunctional in the persons body.
If you have a disease that affects every bodily system which ME is said to do....then how if everyone is different...and the systems that are affected are different like in lupus....does a ME Dr collect this information in a reliable enough manor to publish without the support of government funding, assitance, training in med school, etc.?
With all the potential issues with all bodily systems and very degrees of severity a Dr would have to test so much. Look at what the ICC Criteria requests for testing as well as CCC. Not only does the ICC criteria include blood work, but PET, SPECT, MRI, Microbiome, Immune Panels, Cytokine Panels, Dyautonomia Testing, active and reactivated virus or bacterial tests, spinal taps and the list goes on.
With this in mind how would a Dr. Do this, collect information accurately define stages and subgroups and be able to do so with so little funding? Further how would a patient get a SPECT or PET Scan and the other strange tests done when in for example my city we have 1 SPECT Machine that I know of and it is used for research? Further if you dont have public health care and your insurance does cover all these tests how do you get them done on a limited budget?
My final points are we have Drs wailing for funding when there is only 5 million allocated per year in the US, 200 k in Canada, whatever pennies allocated in other countries.
The disease burden is millions of people with CFS, ME, MUPS, CFID, Yuppie Flu, or whatever you want to call it. It is biological and not psychsomatic. How are you supposed to study it with 5 million per year in the US (granted now more), a list of tests that stretches a mile (per ICC), over 80-90% of Drs that do not believe in the illness and put whatever they want in their notes some true some false, and a patient community that many cant get out of their beds or houses or have the funding or support to get the tests done?
You said:
If it was a t all common it would not be called ME, it would be called iodiopathic malabsorption with fatigue (IMF).If it was a t all common it would not be called ME, it would be called iodiopathic malabsorption with fatigue (IMF)."
Not all will have malabsorption but we all know we are sick....with a similar cascade of symptoms as per CCC/ICC Criteria.
Bowel/GI problems are part of this criteria.
I think what point people are trying to get to via this thread is we the patient have to look for things because many of our Drs dont believe in ME.
And as it stands right now I am wearing a holter monitor for POTS Stuff (DXed), have chest pain, blurred vision, numbness and tingling, muscle twitching, swollen glands and IBS-C this morning with undigested food in my poo and a Lipase test that just came back lowest range 23 i was 24 and my GP Dr said I was fine....I am 30 years old....Am I fine?
My ME specialist Dr straight up told me the degree of turnaround in his office with administrators, nurses, etc. was on average every 6 months.....he said the main reason they leave is because they have a hard time seeing people in so much pain, suffering and sickness.....I have seen the patients really sick ones screaming, crying, etc. and would not be able to take it...especially the young ones which I have seen to...
I know I wrote alot and lIke I said Dr. Edwards I see your points and agree with you but we have an epidemic on our hands if the stats are true.....and how will disbelief, a lack of practioners and support staff, and no or little funding prove that malabsorption is not part of some peoples illnesses.
I went to my neuroligist showed him videos of my twitching, he could not find it on EMG. then he saw them with his eyes on my back upper arm, etc...did not stick the needle in anywhere near the site of the faciculation and told me your symptoms do not show Benign Faciculation Syndrome...you should go exercise more to prevent deconditioning, he knows and doesnt believe in ME and says it is a highly contested illness....i have lost 37 pounds in 11 months I have not been inactive the whole time . I have see 20 (from ER to 9 Top Specialists in my city) other Drs didnt listen to my symptoms either accept my GP.
I guess bottom line is how in these sorts of circumstances being human and wanting to live do we as patients not look for answers anywhere and everywhere when the medical community as a whole disregards us having an illness that is not recognized or id in our heads.
I am not trying to be hostile or disrespectful as this is not in my nature and I am glad you are part of this forum sharing your knowledge and expertise with us.
