Intended for healthcare professionals

Rapid response to:

Feature BMJ Investigation

Long covid patients travel abroad for expensive and experimental “blood washing”

BMJ 2022; 378 doi: https://doi.org/10.1136/bmj.o1671 (Published 12 July 2022) Cite this as: BMJ 2022;378:o1671

 

Video by ITV News, broadcast 13-07-2022

Rapid Response:

Patients have waited long enough already.

Dear Editor

The article and news item beautifully illustrate the intense suffering of those with this illness, and the selflessness of Dr Beate Jaeger. However, I must clarify the following:

-The occurrence of microclots in the blood of Long Covid patients is not a 'theory'. Professor Resia Pretorius has conclusively demonstrated their presence; her controls did not exhibit pathological micro-clotting. The techniques have been replicated in the UK, and the findings shall be published in due course.

-It’s disappointing to hear experts wonder how microclots might give rise to symptoms like fatigue. It is perfectly plausible that circulating thrombi could produce a multiplicity of symptoms secondary to ischaemia. The implication that we shouldn’t treat these clots because we don't know exactly how they’re causing symptoms is baffling.

-The article states (in passing) that 6 patients interviewed did benefit; their experience is glossed over. The experience of two who did not benefit is documented in detail; this makes the piece unbalanced.

-Whilst no intervention is without risk, apheresis has been used safely in Germany for over 3 decades without significant adverse effects. The article and accompanying editorial highlight concerns about perceived risk, yet there is no mention of which adverse events were uncovered in the investigation.

-The way I have been quoted at the end of the article makes me sound irresponsible. I stated to the author in writing that I would not recommend anticoagulation without microclot detection, with only expert clinicians prescribing it. The article omits this context. I would never suggest prescription of potentially toxic drugs without robust investigation by clinicians unfamiliar with this area.

-In response to specialists suggesting that patients should wait for trials, I say this - you have not walked in our shoes. This is a vile illness. When I got called to Germany, I had developed myalgic encephalomyelitis (ME/CFS) with severe dysautonomia and gastroparesis. I could not tolerate sitting upright for more than a few minutes. I had extreme stimulus hypersensitivity - a sliver of light through the blinds would set off neuropathic pain and crippling nausea. Some fellow sufferers have committed suicide, including two UK doctors. I would have gone their way if it hadn't been for clinicians like Dr Jaeger who are prepared to push boundaries. I may not be cured, but I have been given a second chance at life.

There definitely need to be trials of treatment - however, where are they? Given the scale of the suffering (2 million in the UK alone) they need to be happening at lightning speed like they did with RECOVERY in acute COVID. Instead, studies of potentially harmful and unhelpful treatments such as exercise continue to be funded.

-The suggestion that patients should simply continue to access Long Covid services through the NHS is laughable. Feedback about these clinics from fellow sufferers is overwhelmingly negative, with very few patches of good practice. They offer little more than pacing advice and psychological support for what is a serious multisystem organic condition. Patients even struggle to access drugs like antihistamines and beta blockers, which can greatly alleviate symptoms. Some clinics still advise Graded Exercise Therapy (GET) despite NICE clearly stating that it should not be offered in Long Covid or ME/CFS. It is insulting to suggest that patients should trust these clinics, when often they know more about the condition than the clinicians delivering the service. I would not be alive if I had left my care to the Long Covid clinics. I could not have waited any longer: 2.5 years into the pandemic, over 100 million worldwide are still waiting. This is inhuman and unacceptable.

Competing interests: I am a fee-paying patient of Dr Beate Jaeger at Lipidzentrum Nordrhein, and have undergone 15 cycles of HELP apheresis and 6 of plasmapheresis under her care. I have no official affiliation with either Lipidzentrum Nordrhein or The Long Covid Center. I am part of the Long Covid research collaborative that includes Dr Jaeger & Professor Resia Pretorius.

23 July 2022
Asad Khan
Consultant Respiratory Physician
Doctors with ME, Long Covid Kids
Directorate of Respiratory Medicine, Manchester University Hospitals NHS Foundation Trust, Wythenshawe Hospital, Manchester M23 9LT