To those intent on psychologising #LongCovid & #MECFS because ‘there is no biomarker’- let me tell you something as a senior Dr. Many diseases don’t have biomarkers & diagnosis is clinical. Take asthma for example. Symptoms vary between patients. 1/n
Many patients have abnormal exhaled nitric oxide (FeNO) & histamine challenge tests- some don’t. Yet if the patient’s symptoms & signs fit with asthma, we have no hesitation in making the diagnosis. 2/n
There is the well-known example of multiple sclerosis. Many deemed it psychogenic because there was no lab or radiology test that was diagnostic. Until of course the MR scan was invented. 3/n
Take motor neurone disease (ALS). There is no blood or radiology test. Diagnosis is made on the basis of a careful history & examination. 4/n
In #LongCovid & #MECFS, there are actually a plethora of abnormalities on investigation. Cerebral hypoperfusion on transcranial Doppler, reduced anaerobic threshold on CPET, microclotting & activated platelets. Yes studies are small but findings are consistent. 5/n
Even then, just as with asthma above, a lab abnormality doesn’t always have to be present in 100% of patients to make a diagnosis. That is not how medicine works. Sensible doctors know this. Not-so-good doctors & some journalists obviously don’t. 6/n
So this whole biomarker obsession is just stupid. Medicine is a science but at the same time, it will always be a skill too. We can’t test for everything. At least not yet. 7/n
Treating hospital discharges for 14 days with half a dose of one anticoagulant does NOT mean that ‘anticoagulants are ineffective in #LongCovid’ (HEAL-COVID study) 1/n
-this is a different population to the vast majority of #LongCovid
-the role of the hyperactivated platelet has been totally disregarded
-treatment dose apixaban is 5mg bd, not 2.5mg
-even if the correct population & drugs were used, #LongCovid does not get better in 14 days 2/n
The ramifications of this could be catastrophic. It could shut the door on funding for properly designed anticoagulant trials. And millions will continue to endure agony. I cannot emphasise enough what a serious own-goal this is.
Latest #TeamClots preprint on clotting abnormalities in #LongCovid. We demonstrated that the average levels of 6 inflammatory procoagulatory molecules were significantly higher in the soluble fraction of blood in #LongCovid when compared to controls medrxiv.org/content/10.110… 1/n
These werealpha-2-antiplasmin (A2AP), serum amyloid A (SAA), platelet factor 4 (PF4), E-selectin, von Willebrand Factor (VWF) & platelet endothelial cell adhesion molecule-1 (PECAM-1). The mean A2AP level exceeded the upper limit of the lab reference range in #LongCovid 2/n
Considering that large quantities of these molecules have already been detected inside microclots using proteomics, the elevation in plasma/serum means that total levels of these inflammatory mediators are indeed alarming in #LongCovid 3/n
Background- I experienced significant benefit from HELP apheresis & anticoagulation between Sep & Dec 2021, to the point of being able to self-care & take short walks. Unfortunately omicron x 3 more or less undid those gains & I was barely managing bed to bathroom by May 2022 2/n
I was aware of others who had reliably reported great success with @Vedicinals_9 so decided to give it a go. My physician agreed. The vendor was extremely responsive to questions & gave specific instructions on dosing & administration (this is crucial) 3/n
@drclairetaylor@DrRichardPile@DrGoblin3@dr_irfan_malik With pleasure. Dear Drs- don't even attempt to diagnose FND without an extensive workup. Personally I would never diagnose it because 'tests are normal' does not automatically mean 'functional'. We may not have done the right tests, and we can't test for everything organic.
@drclairetaylor@DrRichardPile@DrGoblin3@dr_irfan_malik Here are some cases where an incorrect diagnosis of FND was made- resulting in distress for all, and in some cases physical deterioration. Ultimately they achieved a correct diagnosis- too late for some
I’m going to make an offer to our colleague. Hopefully @DrKGregorovic can convey this message as I am blocked. Happy to have a Zoom coffee with both of you. We can examine
-the paper @awgaffney has tweeted & discuss the flaws
-the evidence for biomedical causation in #MECFS & LC
-the evidence for the ‘false sickness beliefs’
-the quality of the studies advocating exercise & talking therapies
-studies looking at the outcome of exercise in #MECFS & #LongCovid populations
-cardiovascular & other outcomes in #LongCovid