UK: Petition: Specify ME/CFS on the list of neurological conditions under group 6 for UK Covid19 vaccine

Andy

Andy

Retired committee member
ME (or CFS as some still call it) is a chronic neurological condition that affects around 250,000 people across the UK, 75% are too unwell to work or study, 25% are completely housebound or bedbound. It has a worse quality of life score than other common conditions like cancer, but only gets 5% of the research funding that similar conditions like MS receives. There are no effective treatments available, and patients are left trying to manage symptoms often with little medical input.

When the JCVI published the 9 priority groups for the Covid19 vaccine rollout in the UK in late 2020, chronic neurological conditions were listed under group 6. However, when the small print was published, ME was not specifically listed, and therefore when ME patients checked with their GPs that they were on the list, many (including me) were told “the computer system has not flagged you as someone who is vulnerable and in group 6”. The ME Association, Action for ME, and ME Action UK have been clear that there is good evidence that people with ME are vulnerable to Covid19 and should be included in group 6 (some of which is listed below).
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https://www.change.org/p/jvci-speci...d-the-postcode-lottery-of-who-gets-vaccinated
 
arewenearlythereyet said:
Signed...less than 2000 signatures though :(
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It was flagged quite prominently by The Guardian when I logged on this morning, and ME was mentioned specifically, so people are taking notice (which means that activity is going on to make them take notice!).

Have signed it, although disagree that there's a need to make the JCVI apologise. They just need to act on it.
 
I think this is a mistake. I don't know of any theoretical reason to classify PWME as vulnerable for Covid or any clinical evidence that they are. Maybe there is evidence but does anyone know of it? Just being a chronic neurological illness is not a reason to be included. Sciatica is a chronic neurological illness and would not qualify.

Edit: I see that Charles Shepherd has been theoretical risk on the possibility. of PWME relapsing following a new infection. This is not unreasonable as a speculation that Covid-19 might be a particular problem but I am not sure how convincing it is. A counterargument would be that vaccination might precipitate relapse.

Also, since PWME are often quite isolated already I think their risk may actually be below average.
 
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Jonathan Edwards said:
I think this is a mistake. I don't know of any theoretical reason to classify PWME as vulnerable for Covid or any clinical evidence that they are. Maybe there is evidence but does anyone know of it? Just being a chronic neurological illness is not a reason to be included. Sciatica is a chronic neurological illness and would not qualify.

Edit: I see that Charles Shepherd has been theoretical risk on the possibility. of PWME relapsing following a new infection. This is not unreasonable as a speculation that Covid-19 might be a particular problem but I am not sure how convincing it is. A counterargument would be that vaccination might precipitate relapse.
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My first reaction was the same as that of yours, Prof. Edwards, but now I'm not so sure.

We know that the development of ME/CFS can be dependent upon the severity of a precipitating infection (Dubbo et al. "the syndrome was predicted largely by the severity of the acute illness rather than by demographic, psychological, or microbiological factors"), and although this has not been well-studied, many of us have experienced ME relapses immediately after an acute phase response - something that doesn't occur in sciatica! - and that is likely to be far more severe in the case of active COVID-19 infection rather than the milder course resulting from, say, exposure to the chimpanzee adenovirus used as the vector for the AZ vaccine.

I know that's not particularly convincing, but there's a second reason. Regardless of immunological vulnerability, most of us are in a socially precarious position with regards to accessing healthcare. Many of us would not fare at all well in a hospital environment as the result of an acute admission for COVID-19 complications; I have never known the NHS to be accommodating of ME patients' care needs in A&E or a CDU. I know that I would deteriorate even if just placed on a dormitory ward. That is a form of clinical vulnerability.
Also, since PWME are often quite isolated already I think their risk may actually be below average.
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I think there's a counter-argument to be made here, too: while I'm "merely" dependent on family members for care, many of us are dependent on professional carers who are far more exposed to sources of nosocomial transmission. Disruptions to care needs have an immense impact; there's a social case to be made to vaccinate every carer and caree.
 
@Nightsong, I think you make important points. I signed the petition because my daughter has severe ME, as do I. We have been struggling for nearly a year now with no helpers, having laid off cleaner and carers last March.. The thought of having to wait even more months before we can both have our 2 doses is hard to face. But we're not prepared to take the risk of our condition being further worsened by long Covid, or having to go to hospital if we can possibly avoid it.

Putting her in group 6 and her getting her first dose in the next 6 weeks would make a huge difference to us. Otherwise she's not likely to get her first dose until the autumn, and it could be Christmas by the time she gets the second dose. There must be many others in similar and worse situations.
 
Nightsong said:
My first reaction was the same as that of yours, Prof. Edwards, but now I'm not so sure.
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You may be right. The trauma of a PWME getting Covid-19 may be severe, whatever the path.

Perhaps the specific mistake in the petition is to argue that ME should be on the list because it is a chronic neurological condition. That puts everyone of the track of common sense. If there is a vlid reason it is unrelated to what system the illness is put under.
 
Jonathan Edwards said:
You may be right. The trauma of a PWME getting Covid-19 may be severe, whatever the path.

Perhaps the specific mistake in the petition is to argue that ME should be on the list because it is a chronic neurological condition. That puts everyone of the track of common sense. If there is a vlid reason it is unrelated to what system the illness is put under.
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For me I think this is a matter of risk of infection and relapse. I have taken all the precautions I can over the last 11 months but I have a son of school age. There is no practical way to isolate from my son when he returns to school and I have already lost 40% of what I had from a recent infection he brought home from school (mild cold) due to relapse (14 weeks in relapse so far). This has put me from mild to moderate. I don’t think this is unusual with PWME.

in any case the argument is broader. Which neurological conditions should be included? Epilepsy is included for example. This is based on risk of “chronic neurological conditions” and not epilepsy per se? I am not aware of the specific risks within this group. I suspect that it’s broad though.

in which case we should be included for the reason of equity alone. I can’t think why some neurological conditions are included and others not so I think the petition is reasonable on that basis to call for inclusion. It should at least prompt an explanation as to why some in this group has been given priority.

I think it is far too simplistic to say most PWME live in isolation. 25% are working or studying, I’m sure many more have families that could bring the virus to them like me and then there is the group that need daily or periodic care visits. That seems like a large proportion to me.

the risk to me is relapse and lowering of quality of life..it stands to reason that if a mild cold or noravirus can affect a relapse then there is a risk here?

as ever though we can be argued away because of lack of evidence of anything. The absence of evidence and debate about the classification of neurological illness should not preclude people from a better safe than sorry approach in my opinion.

I would gladly wait my turn for a later jab if other chronic neurological conditions hadn’t been included. So I guess the question is what is the specific risk? ..I suspect they don’t have the specificity but you never know.
 
Diabetes isn't classified as CEV but is classified as group 6, according to the letter they (the government) sent me last week telling me to make an appointment for a jab.

It seems being on the 'list' is only dependant on what they have identified, or think, may make someone at risk of needing NHS/hospital care - they have identified diabetes, because they log such things, but as ME isn't logged, they haven't specifically identified that .

Compared with ME diabetes has an insignificant effect on my QoL or my health - it's risks are purely long term - dying or needing significant hospital care is a short term risk, so IMO ME is much more likely to cause an issue, for them, if I catch covid.

But what do I know, I'm not a rich, healthy, government minister.

As I've said before I am in no hurry to get a jab, the way I see it the chances of my catching it whilst shielding are dwarfed by the risks of the trip out to get vaccinated, especially as IMO getting the first jab , at a GP surgery so almost definitely AZ, would likely only reduce my odds of serious issues should I catch CV by 30% ish, vs virtually zero risk if I stay shielded.

It's not as if I can actually go anywhere anyway.
 
Just a follow up..I’ve looked at the MS and epilepsy charities (both included in the JVCI report) and they are saying that in the main the conditions don’t put you at greater risk. Both say that if some patients are taking immunosuppressant drugs then they are at greater risk. But this appears to be a small subset.

I found this which details some of the conditions and assesses COVID risk...doesn’t include ME of course ..perhaps this is part of the problem...they just forgot to assess the risk..so it’s no risk?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7339863/
 
arewenearlythereyet said:
Just a follow up..I’ve looked at the MS and epilepsy charities (both included in the JVCI report) and they are saying that in the main the conditions don’t put you at greater risk.
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This may not be very well thought through. I would certainly expert someone with moderate to severe MS to be very much more at risk of pulmonary complications because of immobility and postural effects on the lungs.

You might argue something similar for ME but I don't think it quite the same. Proning a person with severe ME would be reasonably easy. For someone with marked spasticity from MS not so.

To me the extra risks for epilepsy and MS would be obvious.
 
Wonko said:
IMO ME is much more likely to cause an issue, for them, if I catch covid.
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Again, I doubt this. For some reason being overweight is a massive risk factor for dying with Covid-19, even moderately overweight. It is possible that diabetes is not a risk over and above the strong link to being overweight but the additional link to Asian and African ethnicity suggests to me that the risk has something to do with the metabolic shift that links weight to diabetes. It may be that slim type I diabetics are not at risk but teasing that out may be asking too much for a general guideline.
 
arewenearlythereyet said:
I can’t think why some neurological conditions are included and others not so I think the petition is reasonable on that basis to call for inclusion.
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The problem as I see it is that as soon as any medically knowledgeable person sees the argument
neurological condition therefore at risk therefore we should be on the list
they will see it as ill-informed and not give it a second thought.

If the petition said PWME are likely to be at risk because infection makes them worse then a medically knowledgeable person might think - OK that's fair enough.

The reason why I think the petition as it is is a mistake is the same as my long-standing view that arguing about WHO disease classification simply feeds the prejudice in the medical establishment that PWME have an obsession with their illness being 'physical' or 'a real disease' based on mumbo jumbo picked up from private practitioners. The same members of the medical establishment can be got to agree that ME is a devastating disabling illness but on its own terms rather than fancy terminology.
 
Jonathan Edwards said:
The problem as I see it is that as soon as any medically knowledgeable person sees the argument
neurological condition therefore at risk therefore we should be on the list
they will see it as ill-informed and not give it a second thought.

If the petition said PWME are likely to be at risk because infection makes them worse then a medically knowledgeable person might think - OK that's fair enough.

The reason why I think the petition as it is is a mistake is the same as my long-standing view that arguing about WHO disease classification simply feeds the prejudice in the medical establishment that PWME have an obsession with their illness being 'physical' or 'a real disease' based on mumbo jumbo picked up from private practitioners. The same members of the medical establishment can be got to agree that ME is a devastating disabling illness but on its own terms rather than fancy terminology.
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I see this logic completely. I personally think there isn’t much evidence to put ME in a neurological classification either. But that is not the debate. As long as ME sits in the WHO classification we need to work with it, until such time as research suggests a better place for it.

I agree the petition wording could be better but I’ve signed based on a general unfairness/blanket approach. A bit like the bee one has loads of misleading and inaccurate info in it ...it still raises the profile of bees though.


Jonathan Edwards said:
Epilepsy will be included for the specific reason that high fever induces fits - most specifically in children but I think also in general. It is a direct physiological effect of fever.
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yes but this argues that seizures from Covid are more of a risk to health than an ME relapse from Covid in terms of consequence? I don’t think they are comparable but the point is that a general rule has been applied to cover all when there is a massive heterogeneity within the condition of Epilepsy (e.g. controlled with medication vs uncontrolled etc etc). Generally seizures are not considered life threatening.

Similarly for MS patients there is a wide variance within this group. This is why the various charities are saying that generally there is no greater risk apart from some exceptions I think.

Here are links to what the charities say about it for reference

https://www.epilepsy.org.uk/info/daily-life/safety/coronavirus-covid-19

https://mstrust.org.uk/a-z/coronavirus-covid-19-and-multiple-sclerosis


The petition is useful since it raises the issue that ME is clearly not on the JVCI radar and that’s really a result of politics rather than common sense and good doctoring.
 
Sly Saint said:
except it's not listed under neurological conditions by NICE(?) and I don't think the NHS do either.

https://www.s4me.info/threads/nice-...-10th-november-2020.17687/page-12#post-301651
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This is what is in the MEA fact sheet


“M.E. is classified by the World Health Organisation (WHO) as a neurological disease. The WHO classification is recognised by the Department of
Health, the Medical Research Council and NICE (National Institute for Health and Care Excellence).”

perhaps this is misleading?
 
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