Can we get large-scale observational data on PwME's Covid outcomes to get us on priority list for treatments and vaccine boosters?

Sasha

Sasha

Senior Member (Voting Rights)
About 2/3 of PwME had acute viral onset to our decades of crippling disability, and so it amazes me that we're not on the priority list for either vaccines or drugs such as Paxlovid for acute Covid.

Whatever the genes are for getting chronically smashed up by viruses, we've clearly got them.

If we want to get on that priority list, we need to take action because, as usual, no one will come to save us.

We need data to show what our risk is of bad acute and chronic outcomes of Covid, and what that risk is relative to other diseases on the priority list.

Are there existing big databases that could show this and, if not, could we ask for an ME/CFS question to be added to data collection on Covid? What about Prof Tim Spector's ZOE project?

@Jonathan Edwards, any thoughts on this? @Andy, @Simon M, any outreach/collaboration that DecodeME could do?
 
Andy said:
At this point in time? I would be extremely reluctant to divert our already overstretched DecodeME resources away from the task of delivering DecodeME. Of course we would be open to the idea of collaboration but that would be dependent on what is asked of us.
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Maybe it would just be a question of someone with the academic prestige of Chris Ponting flagging up the issue to people he knows who collect data of that kind?
 
Sasha said:
We need data to show what our risk is of bad acute and chronic outcomes of Covid, and what that risk is relative to other diseases on the priority list.
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I think it would be a big and expensive research task to determine whether pwME have a significantly higher risk of having either

more severe covid-19 symptoms,
longer recovery times,
more risk of getting long covid or
of worsening of our ME/CFS,

taking into account age and comorbidities and other risk factors. It would require a large epidemiological study not only of pwME but of healthy people and people currently listed as clinically vulnerable and therefore eligible for extra vacccine doses and for treatments.

So far we have only an assumption that since we have demonstrably had an adverse long term response to some other infection or other trigger, that this might make us more vulnerable to Covid-19 as well because of genetic predisposing factors. Or an assumption that being already sick with ME/CFS makes us more likely to have worse outcomes from Covid 19 infection. We don't know whether either of these is true.

I think DecodeME will help with this because it will determine not only whether there are genetic predisposing factors in pwME, but also whether pwLC share the same predisposing factors.
 
Trish said:
I think it would be a big and expensive research task to determine whether pwME have a significantly higher risk of having either [...]
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This is why I wondered about ZOE, which has a huge sample size and the ability to easily put questions to its cohort.

taking into account age and comorbidities and other risk factors. It would require a large epidemiological study not only of pwME but of healthy people and people currently listed as clinically vulnerable and therefore eligible for extra vacccine doses and for treatments.
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I don't think it need be perfect to raise PwME's extra vulnerability - if it exists - as a serious issue.
 
Though answering the question now is very important because of the scale of the Covid pandemic, surely the question is broader, rather how do people with ME respond to further virus exposure?

Are people with ME more at risk of catching new viral infections and if so are we likely to experience an ME relapse as a result or more likely to develop new post viral complication such as Long Covid if that can be regarded as distinct to ME? Answering these questions would tell us if people with ME need the same protections as other immuno-compromised groups and if we develop any viral infection this needs treating more aggressively than for the general population with all viruses.

The British MEA have been undertaking surveys on this issue, which though problematic given participants are self selected should give us some hints, and hasn’t another ME charity (I forget which) been gathering anecdotal on people with ME’s response to getting Covid?
 
Sasha said:
This is why I wondered about ZOE, which has a huge sample size and the ability to easily put questions to its cohort.
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Good idea. Why not put it to them. They could do a study across all sorts of underlying conditions and whether they affect vulnerability.

I was doing the Zoe app thing for quite a while, but the questions on symptoms made no sense because they didn't allow for pre-existing overlaps in symptoms, so I found myself continually pretending I didn't have nausea, headache, dizziness etc because I knew they were just part of my ME, not new symptoms that might indicate Covid infection.

In the end I dropped out and deleted the app.
 
Sasha said:
I'd like to, but I would expect any email from me to just disappear in the firehouse of public contact that they must have. I think the approach needs to come from someone with clout - ideally other scientists, possibly with the back-up of our charities.
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I emailed Tim Spector @KCL with a random thought about Zoe at the height of its fame, and got a fairly swift reply. He seems wiling to engage.
 
Unless there are major developments in how new variants behave I think it highly unlikely that there will be any change to the COVID vaccine priorities in the next two years. Priority is established on the basis of known mortality as per section 14a of the COVID Green Book (Table 1) PwME who are in the high priority age groups or who have comorbidities of one of the listed priority conditions will receive booster jabs in the defined order:

The following groups should be offered a COVID-19 booster vaccine in the autumn of 2022:
● residents in a care home for older adults and staff working in care homes for older adults
● frontline health and social care workers
● all adults aged 50 years and over
● persons aged 5 to 49 years in a clinical risk group, as set out in Tables 3 and 4
● persons aged 5 to 49 years who are household contacts of people with
immunosuppression (as defined in Tables 3 and 4)
● persons aged 16 to 49 years who are carers (as defined in Table 3).

Order of roll out
Priority Risk group
1 Residents in a care home for older adults and staff working in care homes for older adults
2 All those 80 years of age and over and frontline health and social care workers
3 All those 75 years of age and over
4 All those 70 years of age and over and clinically extremely vulnerable individuals (not including pregnant women and those under 16 years of age)
5 All those 65 years of age and over
6 Adults aged 16 to 65 years in an at-risk group (see clinical conditions below) [footnote 1]
7 All those 60 years of age and over
8 All those 55 years of age and over
9 All those 50 years of age and over
10 Rest of the population (to be determined)

Clinical conditions list:
  • a blood cancer (such as leukaemia, lymphoma or myeloma)
  • diabetes
  • dementia
  • a heart problem
  • a chest complaint or breathing difficulties, including bronchitis, emphysema or severe asthma
  • a kidney disease
  • a liver disease
  • lowered immunity due to disease or treatment (such as HIV infection, steroid medication, chemotherapy or radiotherapy)
  • rheumatoid arthritis, lupus or psoriasis (who may require long term immunosuppressive treatments)
  • have had an organ transplant
  • had a stroke or a transient ischaemic attack (TIA)
  • a neurological or muscle wasting condition
  • a severe or profound learning disability
  • a problem with your spleen, example sickle cell disease, or you have had your spleen removed
  • are seriously overweight (BMI of 40 and above)
  • are living with a severe mental illness
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Evidence of PwME under the age of 50 having significantly increased mortality from COVID infection would already be apparent so not likely to be a useful line of enquiry. It might be questioned why ME/CFS is not included under "neurological", given NICE guidance - that would likely be the most rewarding line of attack, and PwME could take that up with their GPs or whatever local body is responsible for the booster roll out.

 
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CRG said:
Group 6 Adults aged 16 to 65 years in an at-risk group (see clinical conditions below)
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My GP agreed, after I sent a adaptation of the MEA draft letter to reclassify me as Group 6 on the basis of my ME, but there seems to have been enormous variation in how doctors have responded to this. However with the current round of boosters, talking to others seeing the same GP as me, my invite seems to have only been timed on the basis of my age, though it is hard to be certain given I am already Group 7 by virtue of age.

The MEA tried to get ME included as a named condition for Group 6 but the (government?) refused saying it was a decision for individual clinicians. Some health areas supported the inclusion of ME in Group 6 and others did not, so everything was a complete mess, for example last year in Sheffield some GPs were supporting the inclusion of people with ME in Group 6, but some of the clinical purchasing groups were instructing their GPS not to include us. There were also examples of carers of people with ME jumping up the vaccine categories because of this, while at the same time as the person they care for being only classified by age.

Indeed in the current round, my carer is getting her Covid booster and a free flue jab on the same day as me though she is in her forties, presumably on the grounds that she is now registered as a carer for me and another person with ME. Fortunately this means she can take me to the surgery as we booked consecutive appointments, even though it is not a day she normally works with me.
 
Peter Trewhitt said:
The MEA tried to get ME included as a named condition for Group 6 but the (government?) refused saying it was a decision for individual clinicians. Some health areas supported the inclusion of ME in Group 6 and others did not, so everything was a complete mess, for example last year in Sheffield some GPs were supporting the inclusion of people with ME in Group 6, but some of the clinical purchasing groups were instructing their GPS not to include us. There were also examples of carers of people with ME jumping up the vaccine categories because of this, while at the same time as the person they care for being only classified by age.
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This is by no means new, it was happening with flu jabs from at least ten years ago. The Politicians - in all 4 of the National administrations were saying 'it's up to the GP to decide, but the commissioning bodies who pay for and set the number of vaxs ordered, would frequently instruct GPs to stick to a defined list because there were no spare vaxs for the GPs to exercise discretion. It was less of a contested issue than COVID because the flu vax became readily available privately and a % of patients could afford to get it done at a pharmacy - discriminatory of course on the basis of both price and access to the larger pharmacies that supplied it or did so at the cheapest rates.
 
Ariel said:
Does anyone know if they will make the COVID jabs available privately in the manner of flu shots and if not why not?
I don't really understand this. Thanks.
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My understanding is that they are only available via the NHS here in the UK whilst supplies are still limited. Certainly when I looked into it I could not find an alternative provider to get earlier vaccines.

However I have heard of people that seem to have had injections outside the NHS schedule, so wondered if they had manage to find a private provider.
 
Ariel said:
Does anyone know if they will make the COVID jabs available privately in the manner of flu shots and if not why not?
I don't really understand this. Thanks.
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It's about availability of approved vaccines - annual flu shots are part of a well established process, and costs are low. COVID is still a work in progress and Governments around the world are securing supplies from a limited manufacturing base for the most vulnerable in their own countries. UK entered into ongoing contracts a year ago https://www.theguardian.com/world/2...e-114m-more-covid-vaccines-for-next-two-years If COVID 19 is long term endemic then eventually a market similar to that for the flu vaccine will develop, but that will require settled market conditions which are probably several years away.
 
CRG said:
Unless there are major developments in how new variants behave I think it highly unlikely that there will be any change to the COVID vaccine priorities in the next two years. Priority is established on the basis of known mortality [...]

Priority Risk group
[...]a severe or profound learning disability
are living with a severe mental illness
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I'm a bit surprised that these two groups would have higher mortality from Covid.

Also, I'm surprised that only mortality is being considered, given the devastation caused by Long Covid.
 
Sasha said:
Whatever the genes are for getting chronically smashed up by viruses, we've clearly got them.
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Not really. We seem to be developing ME from immune activation events, whether viral or other microbial infections, or physical trauma ... or vaccines. Once ME is switched on, we're stuck in that state, so future immune activation events may make our severity worse, temporarily or long-term, but we're at least not at risk of developing a second case of ME. Are we more likely to develop strong harm from future viral infections? I don't know, so I agree that statistical data needs to be gathered and processed. For myself, I'm not worried about future infections, since the few I've had since developing ME have been no worse than the ones pre-ME, and have been less severe than as a youth.
 
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