ME Association slams lack of recognition for ME/CFS in new guideline on Long Covid

MEA stakeholder response to the NICE guideline on the management of Long COVID, which is published today.

GENERAL

It is surprising and disappointing to find that the draft guideline: 

(1) Has no recognition that some of the common underlying clusters of symptoms being reported in people with Long/Post COVID are exactly the same as those found in people with a post viral fatigue syndrome (PVFS) or ME/CFS

The key overlapping symptoms include:

activity-induced fatigue; 

myalgia; 

cognitive dysfunction/’brain fog’; 

dysautonomia – involving orthostatic intolerance, 

postural orthostatic tachycardia, postural hypotension; 

headache; 

problems with thermoregulation

unrefreshing sleep patterns and 

post exertional malaise/symptom exacerbation.  

Clipping from The Guardian today, 18 December 2020

It would be very surprising if this was not the case given the fact that any type of viral infection can trigger a post viral fatigue syndrome and research carried out following previous coronavirus infections has reported that 10% or more of those infected go on to develop a PVFS or an ME/CFS like illness.

(2) Contains almost no information on the pragmatic management of the symptoms that are being commonly reported – activity and energy management in particular.  This is also very surprising when a new draft guidance from NICE on the management of ME/CFS has just been published for stakeholder consultation.  This guidance contains detailed recommendations on the sort of energy and activity management that is applicable to people with a post viral fatigue syndrome (regardless of triggering infection) and ME/CFS in both the pre diagnosis and post diagnosis stages.  

Link to draft guideline

It should not be left to the charity sector to be providing the sort of detailed self-help management guidance on all these common symptoms that people with Long COVID are reporting.  

MEA guidance on post COVID fatigue and Long/Post COVID syndromes

“It is very disappointing to find that much of what we have learned about symptom management in ME/CFS, especially the importance of having a period of post-infection convalescence followed by pacing and carefully keeping within an energy envelope, has not been acknowledged or incorporated into this guideline.”

Dr Charles Shepherd in ‘The Guardian’ today

OMISSIONS

EPIDEMIOLOGY AND DEMOGRAPHICS

Whilst acknowledging that evidence is preliminary and emerging, there should be more information on what we currently know about the epidemiology and demographics of COVID.  In particular:

Most cases are being reported in people who self managed at home with a mild or moderate illness 

Many are previously fit young adults in their 20s to 50s

Cases being reported in children and adolescents as well

Female predominance

More likely in people who had multiple symptoms at onset of COVID.  Possible link to asthma

Current evidence suggests that around 10% of people who develop COVID are developing prolonged symptoms – there could be up to 60,000 people with Long COVID

DIET AND NUTRITION

Why is there no guidance on diet and nutrition, especially strategies that can help to sustain energy requirements throughout the day and encouraging good fluid intake – which can help with orthostatic intolerance.  Weight loss should be recorded and advice given where appropriate,

2. ASSESSING PEOPLE WITH NEW OR ON-GOING SYMPTOMS  (2.6)

Why is there no list of symptoms that are commonly being reported?

Possibly in the form of two lists that cover symptoms that are common to PVFS and those which may represent end organ damage from COVID-19…

Symptoms consistent with a PVFS:

Debilitating fatigue that is often activity or exercise induced

Cognitive dysfunction

Dysautonomia – Orthostatic intolerance, PoTS and postural hypotension

Headaches

Myalgia

Unrefreshing sleep

Problems with thermoregulation/temperature control

Post exertional malaise/symptom exacerbation

Symptoms that are consistent with possible end organ damage from COVID 19

Shortness of breath

Chest pains

Arrhythmias and palpitations

Abdominal pain and diarrhoea

Loss of taste and smell

Fevers

2.1  Why is there no mention of possible investigations that could/should be carried out in primary care at this stage?  

For example – Would spirometry help in the assessment of lung damage that may be present?  And ECG may be appropriate if there are cardiac symptoms.

Autonomic nervous system dysfunction can be assessed using a Composite Autonomic Symptom Scale

3  FURTHER INVESTIGATION AND REFERRAL

Why is there no mention of the new network of Post/Long COVID clinics and how contact details and protocols can be accessed

3.3  Post viral syndromes can precipitate other medical conditions that have remained silent up until now.  So clinical judgement needs to be used to assess whether persisting symptoms are simply linked to COVID. For example

Could persisting abdominal pain and diarrhoea be due to an inflammatory bowel disease being precipitated?  

Could muscle pain be due to a polymyalgia rheumatica being precipitated – as has been reported?  

Could muscle weakness be due to myasthenia gravis? – as reported in the ‘Annals of Internal Medicine’.

3.3  refer to other inflammatory markers in people with persisting bowel symptoms following  COVID – ie calprotectin

3.4  The use of exercise testing requires further clarification.  Exercise testing does not form part of the clinical assessment of people who have a PVFS or ME/CFS.  It may have some value in assessing cardiorespiratory function where this has been affected by the acute infection..  However, is there any evidence to indicate that this is a safe procedure to carry out in people with Long COVID who are experiencing post exertional symptom exacerbation.?

Research evidence indicates that a two day cardiopulmonary exercise test can be helpful in the clinical assessment, diagnosis and monitoring of people with PVFS and ME/CFS.  However it can cause an exacerbation of symptoms.

4  MANAGEMENT

This whole section is inadequate

I can understand why symptoms relating to end organ damage involving heart, lungs etc are being referred to other sources of information on their management

But why is there no basic information on the management of the main post viral symptoms, activity and energy management in particular, that are associated with COVID:

Activity induced fatigue

Cognitive dysfunction

Dysautonomia

Headaches

Sleep disturbance

Post exertional malaise

Especially when guidance on these symptoms is contained in the new (draft) ME/CFS guidance

We are particularly concerned about the emphasis on the use of the terms rehabilitation and goal setting at whatever stage a person is at in their Long COVID journey.  There is no reference to the importance of rest, convalescence and pacing physical and mental activities when it becomes apparent that a person is not recovering from a COVID infection after a few weeks.  Experience of dealing with people who have PVFS indicates that appropriate advice on activity and energy management during the very early stages (ie weeks) following the triggering infection can have a very beneficial effect on outcome.  We are hearing from people with Long/post COVID who have relapsed as a result of returning to exercise too early onor trying to do too much and not keeping within their energy envelope.

Why is there no reference to the warning that NICE issued in July in relation to the use of graded exercise therapy?

CASE DEFINITIONS

As already stated, this guidance could learn a lot from charity and physician experience of dealing with people who have a variety of post infectious fatigue syndromes

In other words >>

The first definition is OK for people who remain symptomatic for up to four weeks.

After four weeks it would be more appropriate to be labelling this as a Long/Post COVID syndrome.

And where symptoms persist for more than three months, and are consistent with diagnostic criteria for ME/CFS, serious consideration should be given as to whether the person does now have Post COVID ME/CFS.

The ME Association

Please support our vital work

We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.

If you would like to support our efforts and ensure we are able to inform, support, campaign, and invest in biomedical research, then please donate today.

Just click the image opposite or click here for one-off donations or to establish a regular payment.

You can even establish your own fundraising event on JustGiving.

Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive ME Essential – quite simply the best M.E. magazine!


ME Association Registered Charity Number 801279


ME CONNECT HELPLINE

0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.