letter to the bateman horne center

Dear Madam, Dear Sir,

We are contacting you regarding the release of the guide “Clinical Care Guide, Managing ME/CFS, Long COVID & IACCs”. We, associations and patient researchers are composed of Long COVID (LC) patients with diverse disease presentations, and some Covid concerned persons. We have looked at the content of the recommendations for Long COVID in your guide. 

We are concerned to see that this guide does not address the entire spectrum of Long COVID, nor the management of major risks connected with the disease. We highlight that some research suggests mortality among LC patients is doubled (1) compared with matched controls during the first year after infection due to cardiovascular problems mainly, but also organ damage, etc. In addition, very close monitoring might be needed and is recommended to avoid complications, now well documented in multiple organs (e.g. kidneys, vessels, heart, brain (2, 3)). Even if PEM and other comorbidities are obviously important to manage, the answer for LC patients cannot be only compassionate care. Rather, multidisciplinary support is needed, based on the detection and management of the risks for deterioration and/or complications. Optimisation of life expectancy has to be one of the main goals, as is the case for other chronic illnesses. Long COVID needs management addressing all its presentations (often cumulative).

Main problems:

1. In chapter 2, “Basics of Long COVID”, the description of the disease barely takes three lines. The disease seems to consist of a series of symptoms with no clear aetiologies or related mechanisms. Yet, research has shown it is a multi systemic, vascular-mediated pathology and has found several causative mechanisms (thromboinflammation, viral persistence, dysimmunity…) with organ damage consequences, requiring prevention and early intervention.

Indeed, Long COVID presents some considerable risks. Organ damages (kidney failure,…), heart  and vessel complications (4) need to be assessed, and they do not appear in the document, which is very worrying for LC patients. In the guide, cardiovascular problems seems to be automatically supposed to be PoTS : while many may have PoTS, there can be plenty of other problems (some very specific to LC patients (5), other less but still not falling under a PoTS diagnosis (6)), which can put LC patients’ life in danger (7). It is, therefore, concerning not addressing in the guide examinations that are necessary to monitor these conditions and any relevant risks (e.g. for cardiovascular involvement, ventilation/perfusion SPECT-CT is needed for defects that are not visible on conventional CT scans, or cardiac MRI might be required rather than echocardiography. Similarly, some anticoagulants are preferable to others). Healthcare professionals might not be aware of these additional risks and specific LC manifestations. Specialist, tailored care, therefore, must be able to identify these problems.

2. Long COVID patients can present specific symptoms that are not addressed in the document. The specialists who contributed to the document, apart from internal medicine, are limited to Neuropsychology, Counseling psychology, Disability and Medical Trauma, Physical Therapy, Family Medicine. This is a major problem. We recommend to include multidisciplinary perspectives (e.g. from cardiology, hematology, nephrology, pneumology, virology) in line with the multi-system nature of Long COVID, as recommended in the NASEM guidelines (8), rather than so many fields of psychology.

3. Long COVID is, prospectively, a progressive illness. While we are already aware of many mechanisms and risks, we still don’t know whether other problems might appear in the future. Specific examinations (e.g MRI, detection, SPECT-CT, blood tests…) should be prescribed depending on the clinical evaluation, and checked regularly if any abnormalities are detected. Early detection of cancer (9) should be advised too.

4. The « severe and very severe » part (chapter 14) only includes ME presentation. Severity in Long COVID cannot be assessed only through the ME manifestations. In addition to increased risk for death and life-threatening events in LC, some patients are severe and bedbound without meeting the ME/CFS criteria. 

5. We cannot see in the guide any recommendation about prevention, and the need for all the patients to be protected (masks, ventilation, purified air) from SARS-CoV-2 in healthcare.Yet, reinfections frequently harm the patients.

We are very glad for some of the recommendations (ME, PEM, POTS, MCAS) you present in the document, as we know a subset of patients can develop them or have similar presentations as part of their Long COVID. However, we must raise our concerns about some evident key gaps in the guide’s recommendations for LC care. LC guidelines must address the full scope of this new illness. Failing to address this broad spectrum can result in missed opportunities for sufferers. The full spectrum of LC includes, but is not limited to : organ damage, autoimmune disorders, gastrointestinal problems (possibly due to viral persistence in the gut). Cardiovascular events are often delayed, driven by chronic disease processes. At any rate, we believe that LC guidelines should be constructed in collaboration with LC groups that address the entire scope of the disease. Organisations should not select unilaterally some LC manifestations while claiming the guidelines are for Long COVID in general.

Our demands, as Long COVID groups and advocates : We ask you to consider changing the title of your document. You could suppress or change the “Long COVID” part to specify that you only address a limited part of the disease. Otherwise, you could refer your readers to other centers (that need to be specified) in case of organ damage, kidney problems, auto-immune problems, cardiovascular symptoms or events, some neurological issues such as strokes, etc… 

The communication surrounding your guide revolves around “compassionate care”. We, Long COVID groups, want to obtain proactive care and adapted examinations, with prevention of avoidable complications or deteriorations, in accordance with the Long COVID manifesto (10).

But we would also like to point out that, for all those different diseases you discuss in the guide, compassion should consist, at the very least, in integrating guidelines for infection prevention (e.g. masking, clean air). This is to avoid health deterioration due to SARS-CoV-2 infection : whether these patients suffer from lupus, heart problems, Long COVID, hEDS or ME/CFS, they all need to be protected from repeated infections, even more when seeking specialist care.

Thank you for your attention. While we are looking forward to your response, we send you our most sincere greetings.

Signatories

 Members of Long COVID Rise Up Federation

and Association ACOPASTUR, Spain