Request for information regarding comparisons with ME/CFS and Long Covid

Lidia Thompson

Lidia Thompson

Senior Member (Voting Rights)
Hi,
I'm good friends with a local Councillor's wife. (Both of them have been very supportive of pwME. I have sent them all sorts of information on ME over the years. Indeed, they both followed the NICE Guideline debacle with great interest.)

They have a friend who now has Long Covid. When (my friend) Jo suggested to her that it was similar to ME/CFS, she said "yeah and the rest". She said long Covid has loads of extra symptoms linked to the nervous system (smelling strange things that aren't there, tinnitus, pain etc etc) and circulation issues, like blood clots and also extreme menstruation.

Jo is wondering whether lots of these problems are in fact experienced by people with ME/CFS but that the information isn't widely known. So she has asked me to direct her to something that summarises the similarities and differences ... She has even asked to do a zoom call with me!

I suspect that whoever this person is who balked at the comparison between ME/CFS and Long Covid and in turn minimised the severity and seriousness of ME/CFS, is probably in a position of influence otherwise Jo would not be expressly asking for information.

I can think of 2 or 3 things I could send her off the top of my head, but believe a joint effort would lead to a more complete response.

So could you help me with this please folks?
Thanks in advance.
 
Has NICE started the Long Covid process yet which may be a good starting point?
https://www.nice.org.uk/guidance/ng188

COVID-19 rapid guideline: managing the long-term effects of COVID-19
NICE guideline [NG188] Published: 18 December 2020 Last updated: 11 November 2021

https://www.nice.org.uk/guidance/published?ngt=COVID-19 rapid guidelines&ndt=Guidance
Title Reference number Published Last updated
COVID-19 rapid guideline: managing COVID-19 NG191 23 March 2021 16 December 2021
COVID-19 rapid guideline: managing the long-term effects of COVID-19 NG188 18 December 2020 11 November 2021
COVID-19 rapid guideline: vaccine-induced immune thrombocytopenia and thrombosis (VITT) NG200 29 July 2021 29 July 2021
COVID-19 rapid guideline: haematopoietic stem cell transplantation NG164 1 April 2020 22 July 2021
COVID-19 rapid guideline: gastrointestinal and liver conditions treated with drugs affecting the immune response NG172 23 April 2020 9 April 2021
COVID-19 rapid guideline: dermatological conditions treated with drugs affecting the immune response NG169 9 April 2020 9 April 2021
COVID-19 rapid guideline: rheumatological autoimmune, inflammatory and metabolic bone disorders NG167 3 April 2020 31 March 2021
COVID-19 rapid guideline: delivery of systemic anticancer treatments NG161 20 March 2020 12 February 2021
COVID-19 rapid guideline: delivery of radiotherapy NG162 28 March 2020 12 February 2021
COVID-19 rapid guideline: vitamin D NG187 17 December 2020 17 December 2020
COVID-19 rapid guideline: cystic fibrosis NG170 9 April 2020 7 October 2020
COVID-19 rapid guideline: dialysis service delivery NG160 20 March 2020 11 September 2020
COVID-19 rapid guideline: renal transplantation NG178 19 June 2020 19 August 2020
COVID-19 rapid guideline: children and young people who are immunocompromised NG174 1 May 2020 14 August 2020
COVID-19 rapid guideline: arranging planned care in hospitals and diagnostic services NG179 27 July 2020 27 July 2020
COVID-19 rapid guideline: chronic kidney disease NG176 15 May 2020 15 May 2020
COVID-19 rapid guideline: interstitial lung disease NG177 15 May 2020 15 May 2020
COVID-19 rapid guideline: community-based care of patients with chronic obstructive pulmonary disease (COPD) NG168 9 April 2020 9 April 2020
COVID-19 rapid guideline: severe asthma
 
Lidia Thompson said:
When (my friend) Jo suggested to her that it was similar to ME/CFS, she said "yeah and the rest". She said long Covid has loads of extra symptoms linked to the nervous system (smelling strange things that aren't there, tinnitus, pain etc etc) and circulation issues
Click to expand...

I have these. In fact, about the only Long Haul symptom I've never had is the loss of taste and smell (which seems to be more common during the acute stage of the infection anyway. I rarely see Long Haulers mentioning this after 6 months of illness).

The r/covidlonghaulers sub on reddit these days is fairly indistinguishable from an ME/CFS forum. There's plenty of posts about alcohol intolerance, insomnia, fasciculations, brain fog, PEM, new food intolerances, POTS etc. More than a few are receiving ME/CFS diagnoses too.

I remember @Tom Kindlon engaging with the "CFS is just fatigue" line from Long Haulers early on in the debate. He posted some fairly informative graphics etc.

I saved a few of them but I'm sure he'd have more.

Ert6kmVW4AEId5g.jpg Ert6kl7XAAI0OVI.jpg
 
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The new NICE guideline lists common symptoms of ME in addition to the 4 core criteria, and the different diagnostic criteria have long lists.
I think it's clear there are some problems specific to the covid virus that can cause ongoing problems too, so it's more a case of overlap rather than being the same. But that's true for ME too, as we don't all have every symptom on the long lists.
 
https://www.nice.org.uk/guidance/ng...e-longterm-effects-of-covid19-pdf-51035515742
COVID-19 rapid guideline: managing the long-term effects of COVID-19 Main editor National Institute for Health and Care Excellence (NICE), Scottish Intercollegiate Guidelines Network (SIGN) and Royal College of General Practitioners (RCGP) Publishing, version history and subscription 1.9 published on 14.01.2022

https://files.magicapp.org/guidelin...__signs_symptoms_prevalence_FINAL_r400908.pdf
COVID-19 rapid evidence review: Signs, symptoms and prevalence

Table 3: Signs and symptoms reported in systematic reviews: Systemic symptoms
Quick lokk seems very much overlapping with ME!
 
Long COVID is a non specific term covering a whole raft of clinical entities. "And the rest" is a fair comment given that Long COVID means a whole lot of different things - at this stage of knowledge and perception, a whole lot of things to different people. I don't think that saying Long COVID isn't ME/CFS says anything at all about the seriousness of ME/CFS.

ME/CFS is now (mostly) seen as a single clinical entity as described by various criteria (CDC, NICE etc) so ME/CFS = Long COVID is a false equation because in clinical terms ME/CFS is one thing (although it may have many causes) but Long COVID is lots of things.

Looking for ever more symptoms to add to the ME/CFS list is problematic, many symptoms ascribed to Long COVID are common across diseases and across human populations, the longer the list the less it is possible to support ME/CFS as a single clinical entity and you end up with ME/CFS Types 1, 2. 3 etc based around symptom lists that apply only to groups of patients, and which are then difficult to distinguish from the background of illness in the wider population.

Research may indeed lead to recognition of different Types of ME/CFS based on what is actually causing disease in individuals, but this may be very different from groupings based around symptom lists. There aren't going to be many male patients in a group characterised by extreme menstruation.

Some patients who are diagnosed as having a post COVID syndrome will meet ME/CFS diagnostic criteria, how significant this is will only become clear once the rate/speed of remission is established, and the overlap between what may be only relatively short post infection syndromes and lifetime ME/CFS becomes more clear.

One of things we don't know is how many people become ill with ME/CFS each year, and we only have very poor evidence about what the average rate of remission is, so at this stage we don't know that people diagnosed with ME/CFS after COVID represent an increase in ME/CFS incidence, or whether COVID infection and ME/CFS onst are just co-morbidities, that is the ME/CFS patients may have become ill anyway irrespective of having a positive COVID test.
 
CRG said:
Long COVID is a non specific term covering a whole raft of clinical entities
Click to expand...
So is ME/CFS. As is chronic Lyme.

CRG said:
ME/CFS is now (mostly) seen as a single clinical entity as described by various criteria (CDC, NICE etc)
Click to expand...
Who really thinks that except people who hail back to Ramsey?

CRG said:
Looking for ever more symptoms to add to the ME/CFS list is problematic, many symptoms ascribed to Long COVID are common across diseases and across human populations, the longer the list the less it is possible to support ME/CFS as a single clinical entity and you end up with ME/CFS Types 1, 2. 3 etc based around symptom lists that apply only to groups of patients, and which are then difficult to distinguish from the background of illness in the wider population.
Click to expand...
You need to let the symptoms define the disease, not researchers beliefs who only sense one part of the elephant. This is a problem in many areas of medical research, but seems especially prevalent in new and contested diseases where studies into those diseases don't always have their parameters defined by patient reports, but rather researcher biases. One example is reflected in the OP, i.e., how does LC compare with ME/CFS, and certainly LC since it's so soon - this is a very different thing than comparing Covid to ME/CFS.

CRG said:
Some patients who are diagnosed as having a post COVID syndrome will meet ME/CFS diagnostic criteria, how significant this is will only become clear once the rate/speed of remission is established, and the overlap between what may be only relatively short post infection syndromes and lifetime ME/CFS becomes more clear.
Click to expand...
You've some assumptions embedded in here.

CRG said:
One of things we don't know is how many people become ill with ME/CFS each year, and we only have very poor evidence about what the average rate of remission is,
Click to expand...
Rate of remission, I suspect, will depend in whose camp you place your tent. Among many ME/CFS patients, "rate of remission" seems almost like someone else's narrative. Remission seems, well, not out of reach, but exceptional. So the rate will likely be low, but to even talk about rate of remission when talking ME/CFS, and certainly LC since it's still developing in real time, seems zestfully optimistic to me. But we could all use some optimism. :)

LC studies I've seen like to couch duration in strangely limiting ways, much as some BPS studies seem to have done with ME/CFS. For instance, "symptoms in LC can last six months" (my paraphrase) suggests the symptoms subside after six months, but we know for many LC patients, this is not the case.
 
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Hi folks.
Thank you (as ever) for the wealth of information you are able to provide. It's MUCH- appreciated.

However, I'm not sure how well I explained myself.

Reading between the lines, the woman with Long Covid is well-read and up on the research on Long Covid.
I think that it's her absolute minimising and dismissal of ME/CFS that my friend Jo would like to address and the denial of any link.

It seems the LC woman is using the argument that "Long Covid is serious and here's the evidence ..." whilst thinking that no such comparable evidence exists in the field on ME/CFS, particularly with regards to ME/CFS being a serious disease with (similar?) underlying abnormalities.

I was thinking of sending her something like this for example, but I'm not sure there is enough 'meat' here!
https://www.emerge.org.au/research-...&utm_campaign=novemberlaunch&utm_id=longCOVID
 
Lidia Thompson said:
It seems the LC woman is using the argument that "Long Covid is serious and here's the evidence ..." whilst thinking that no such comparable evidence exists in the field on ME/CFS, particularly with regards to ME/CFS being a serious disease with (similar?) underlying abnormalities.
Click to expand...
I think it's an unfortunate fact that suffering from one disease often does not purge a person of pre-existing prejudices about another disease. Indeed it might even reinforce those prejudices, if there is a fear it might be seen to diminish the apparent significance of "their" illness.

I have found that, sometimes, trying to bulldoze your own understanding at the person, no matter how technically right you may be, will fail to achieve any change of insight, human nature being what it is. A much more effective strategy can be to ask the person sensibly and sensitively constructed questions, because by answering such questions a person will then sometimes gain insights much more effectively.
 
Lidia Thompson said:
Hi folks.
Thank you (as ever) for the wealth of information you are able to provide. It's MUCH- appreciated.

However, I'm not sure how well I explained myself.

Reading between the lines, the woman with Long Covid is well-read and up on the research on Long Covid.
I think that it's her absolute minimising and dismissal of ME/CFS that my friend Jo would like to address and the denial of any link.

It seems the LC woman is using the argument that "Long Covid is serious and here's the evidence ..." whilst thinking that no such comparable evidence exists in the field on ME/CFS, particularly with regards to ME/CFS being a serious disease with (similar?) underlying abnormalities.

I was thinking of sending her something like this for example, but I'm not sure there is enough 'meat' here!
https://www.emerge.org.au/research-...&utm_campaign=novemberlaunch&utm_id=longCOVID
Click to expand...
So it depends on what you want to provide evidence for here. Is it that you want to show that the lives of pwME can be seriously impacted, or that biologically our systems are impaired, or show the significant overlap of symptoms of Long Covid and ME, or something else? Each of these options would typically be shown in different papers, so narrowing your search down would make it easier.
 
I think I might point them in the direction of the diagnosis and severe ME sections of the NICE guidelines
https://www.nice.org.uk/guidance/ng...e-for-people-with-severe-or-very-severe-mecfs

Box 2 Symptoms for suspecting ME/CFS
All of these symptoms should be present:
  • Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.

  • Post-exertional malaise after activity in which the worsening of symptoms:
    • is often delayed in onset by hours or days

    • is disproportionate to the activity

    • has a prolonged recovery time that may last hours, days, weeks or longer.
  • Unrefreshing sleep or sleep disturbance (or both), which may include:
    • feeling exhausted, feeling flu-like and stiff on waking

    • broken or shallow sleep, altered sleep pattern or hypersomnia.
  • Cognitive difficulties (sometimes described as 'brain fog'), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.
    ______________
1.2.4
Be aware that the following symptoms may also be associated with, but are not exclusive to, ME/CFS:

orthostatic intolerance and autonomic dysfunction, including dizziness, palpitations, fainting, nausea on standing or sitting upright from a reclining position

  • temperature hypersensitivity resulting in profuse sweating, chills, hot flushes, or feeling very cold
  • neuromuscular symptoms, including twitching and myoclonic jerks
  • flu-like symptoms, including sore throat, tender glands, nausea, chills or muscle aches
  • intolerance to alcohol, or to certain foods and chemicals
  • heightened sensory sensitivities, including to light, sound, touch, taste and smell
  • pain, including pain on touch, myalgia, headaches, eye pain, abdominal pain or joint pain without acute redness, swelling or effusion.
    __________________
  • Severe ME/CFS

  • People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.

    Very severe ME/CFS

    People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.
    _________________

1.17 severe or very severe ME/CFS.

main section on principles of care for people with ME/CFS.

1.17.1 Be aware that people with severe or very severe ME/CFS may experience the following symptoms that significantly affect their lives, including their mobility, emotional wellbeing and ability to interact with others and care for themselves:

  • severe and constant pain, which can have muscular, arthralgic or neuropathic features

  • unrefreshing sleep, hypersomnia and altered sleep pattern

  • gastrointestinal difficulties such as nausea, incontinence, constipation and bloating

  • neurological symptoms such as double vision and other visual disorders, dizziness

  • orthostatic intolerance and autonomic dysfunction, such as postural orthostatic tachycardia syndrome (POTS) and postural hypotension.
1.17.2 advocate and communicate for them
  • are unable to eat and digest food easily and may need support with hydration and nutrition (see the recommendations on dietary management and strategies)
    have problems accessing information, for example because of difficulty with screens, sound and light sensitivity, headaches affecting their ability to read, or brain fog affecting their concentration.
________________

And give them a link to the Dialogues for a Neglected Illness videos.
https://www.dialogues-mecfs.co.uk/
 
BTW, thanks everyone for the suggestions so far. I'll put together a thread for Jo.

Jo is a sensitive person so I trust her completely not to bombard a sick friend with loads of information. (Point taken Barry!)

But I think it's probably worth providing Jo with this kind of information in general anyway, because I know she's in a position to influence and disseminate this kind of thing and so influence the narrative ... which is what I think she's trying to do, hence the request.
 
Lidia Thompson said:
Hi,
I'm good friends with a local Councillor's wife. (Both of them have been very supportive of pwME. I have sent them all sorts of information on ME over the years. Indeed, they both followed the NICE Guideline debacle with great interest.)

They have a friend who now has Long Covid. When (my friend) Jo suggested to her that it was similar to ME/CFS, she said "yeah and the rest". She said long Covid has loads of extra symptoms linked to the nervous system (smelling strange things that aren't there, tinnitus, pain etc etc) and circulation issues, like blood clots and also extreme menstruation.

Jo is wondering whether lots of these problems are in fact experienced by people with ME/CFS but that the information isn't widely known. So she has asked me to direct her to something that summarises the similarities and differences ... She has even asked to do a zoom call with me!

I suspect that whoever this person is who balked at the comparison between ME/CFS and Long Covid and in turn minimised the severity and seriousness of ME/CFS, is probably in a position of influence otherwise Jo would not be expressly asking for information.

I can think of 2 or 3 things I could send her off the top of my head, but believe a joint effort would lead to a more complete response.

So could you help me with this please folks?
Thanks in advance.
Click to expand...

Hello I can’t help you with your specific question because my memory is so bad. But I would think that some of the lists and descriptions for ME rather than CFS from CCC or ICC/ICC or summary descriptions/observed symptom patterns from main biomedical research bodies or charities (careful with this one) maybe 25% ers would be one to have the best stuff to hand?

I think there is two separate problems here.

First.

This woman listed symptoms she believed “extra” to ME, which in fact are common to people with ME

She probably did this because the ideology that holds that ME is; if it exists at all overall a rather minor ailment, has been successfully disseminated everywhere.

One aspect of this that cuts across people who “accept ME”and those who don’t is a view of this condition as tiredness, fatigue or exhaustion.

Those who do accept, believe that to endure unrelenting fatigue is enough of burden to suffer. This counts. They believe this condition should be treated. They believe suffers should be treated well.

Those who don’t accept, instead believe that suffers are exaggerating the distress that they are in or else that suffers failure to learn how not to suffer with tiredness fatigue or exhaustion must learn quickly or else are to be written off.

Obviously those who “do” are correct and those who “don’t” are wrong on all moral ethical and practical levels.

However this doesn’t mean that the former group who do “accept ME” understand the condition. Pathological fatigue is a serious debilitating condition. A body is struggling to function.
For those with ME fatigue is one of many complications. Many or most people would know this if the medical professionals were not working so hard to undermine this understanding.

If ME were extreme fatigue only it would be enough. To be too exhausted to get out of bed for years and years is serious. But ME isn’t extreme fatigue only. It is a lot.

So this woman does need it patiently explained to her that she is wrong in her understanding of ME.

To gently point out that speaking about ME in this way is disrespectful to our community who have suffered decades of the neglect her community now faces.

To assure the women that she can speak on the serious nature of long Covid without minimising the suffering of those in the ME community who have given the long Covid community so much of the knowledge and language that they now rely heavily upon in order to protect themselves from the mistreatment by corporate, medical and state institutions.

Second.

This second difficulty is related to the first.

People with LC seem on occasion keen to dismiss ME in order that they not be associated with a disposable patient population.

People with ME seem on occasion keen to emphasise the overlap between ME and LC to the point of suggesting that where there is enough enough shared they can be considered one and the same condition.
There is such a lot in common. Still, I feel this is an overreach that sometimes occurs from the ME community possibly to emphasise the seriousness in comparison.

Some forms of LC are almost indistinguishable from ME. Might actually be ME. Surely if ME treated LC would be more treatable than it currently is.

But would be a shame if differences weren’t kept in mind. Least both types or various stages of post viral illness were less well studied as a result.

I have severe ME. I’ve had LC since April 2020. They overlap but there are some very striking differences. I imagine this is likely for others too. Such a missed opportunity to study those of us with ME at the start of our illness and record results so that they are comparable by different viruses of infection where known.
 
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