DecodeME - UK ME/CFS DNA study underway

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cassava7 said:
Future generations could be told whether they are at a higher risk of developing ME and, subsequently, could be incited to minimize their exposure to pathogens & other ME triggers. That alone would be a significant step forward, we cannot afford to let one more generation to suffer from ME.
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Be careful what you wish for.

While recognizing that someone 's abnormal or lack of recovery from an infection may be due to an increased genetic risk of developing ME, increased risk doesn't necessarily mean a person will develop it.

I respect some might choose to be forewarned but it's worth bearing in mind that this sort of thing could easily disadvantage people applying for insurance, mortgages, jobs etc..
 
Andy said:
I'm double checking and will come back when I know more.
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Like others, I didn’t get a confirmatory email after registering. I also didn’t get an email from the previous site telling me about DecodeME.

Can I suggest that

1) It would be a good idea for everyone who has already registered to now be sent an email thanking them for registering their interest and asking them to pass on the information to any anyone they know with ME/CFS, with links for sharing on social media and a maybe short email/text template for sharing with people too.

2) Everyone who registered with the old site should be emailed too.

3) An auto-confirmatory email system from here on would be a good idea.

Meanwhile, apart from the local radio interviews, there doesn’t seem to have been any coverage on the BBC or in any of the tabloids. I’m wondering what efforts are being made to get it more widely reported, and whether there is anything any of us can do to help.

The DecodeME team have done brilliantly to get the coverage in the Times and the Guardian but we really need it reported everywhere in order to reach the patients who aren’t involved with ME groups.

Is there an official press release that those of us with media contacts can share? Has anyone sent info to Jerome Burne or James Le Fanu who have written positive articles on PACE and ME in the Mail and Telegraph? (I can PM you their email addresses if you don’t have them, Andy.)

Of course, if the SMC were to cover it, it would immediately be all over the BBC and in every newspaper but there is no knowing what unhelpful narratives and agendas it might attach.
 
Andy said:
I'm double checking and will come back when I know more.
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Thanks. I just want to make sure I did it right and that any emails don’t go into spam etc.

Some of my family members have registered to be part of the non ME group.

I have told a friend with ME about it and shared.

I did register on the original website but didn’t know it had changed, a family member saw the newspaper article and told me, otherwise I’d not have known because I had to take a break from online.
 
Post-exertional malaise (PEM) will be a mandatory symptom. This is because patients, patients’ organisations, and ME/CFS biomedical researchers all regard it as a defining symptom of the disease.
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I know I'm a minority opinion on this, but I do not support having PEM as a mandatory symptom (Yes, I know PEM is required under CCC and IOM). I'm 100% sure I have the syndrome of ME/CFS. I am not 100% sure I have this acute PEM thing. If I have a day with 10,000 steps, the following day(s), I am not guaranteed to be "crashed" and completely bed-bound for days. In general, I have days and periods when I am worse than others, but I am not sure I reliably have this acute PEM symptom. If I was applying for to be a part of this study, I would probably say that yes I have PEM, but I am not really sure if I have PEM as others describe it.
 
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Jaybee00 said:
If I have a day with 10,000 steps, the following day(s), I am not guaranteed to be "crashed" and completely bed-bound for days.
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No, nor would I (if I could walk that far).

If I did a comparable amount of work in the swimming pool, I'd develop swollen lymph nodes in my neck 24 hours later, and would need to schedule a couple of much more restful days afterwards. If I didn't, my symptoms would begin to flare; I wouldn't be bed-bound, I'd just feel wiped out, sore, and grumpy, and have no control over my body temperature.

I'm feeling exactly like that now, actually, after going out two days this week in the heat! But at the moment, I'd probably need to exceed my envelope on several days in succession to be unwell enough to need daytime bed rest.

The main thing is that, even if it is on the mild end of the spectrum, it's inevitable; I'm never able to stop pacing. Even if the payback's only minor, it's still PEM.
 
Jaybee00 said:
I am not 100% sure I have this acute PEM thing.
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I think different people may experience PEM differently. Over the course of my illness how I have experienced PEM has varied. It may be that some.of the variation is due to increased sever but I think there's a lot more to it.

In the earlier (and less severe years), once I started getting a handle on pacing and stopped pushing I reached a stable place. While I still experienced PEM it wasn't acute & that may be partly because my "envelope" was at it's widest.

PEM can be a subtle thing. With a delay time of up to 3 days and, given some patients don't experience high levels of pain or sudden severe cognitive impairment, it can be a slippery creature to track and define.
 
Jaybee00 said:
I'm 100% sure I have the syndrome of ME/CFS. I am not 100% sure I have this acute PEM thing
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In my view PEM, at least at my level of severity, is something that is often the result of the cumulative doses of exertion, rather than single large doses of exertion. That means it matters how close to my tolerated level of exertion I was during the preceding days. I've also often seen PEM happening in response to doing a little more for just a day (but maybe that just means on the previous days I was too close to my limit).

If I'm pacing well, I can often tolerate doing significantly more than usual but this is not sustainable and needs to be followed by a few days of low activity. This is exactly how I want it, because I need to have some spare capacity to handle unexpected events.
 
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Milo said:
That is a bit of a scary thought but general practitioners do not know the difference between criteria, or the nuances, and most of them would not know what post exertional malaise means. And in Canada, most physicians do not even know the Canadian Consensus Criteria. Most patients have had to educate their physicians, and that is a horrifying thought for all the physicians out there.

Medical education for ME is still inexistent in med schools. There is a lot of work to be done.

Edit to add: most patients would be able to tell which case definition they meet and do not meet.
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I don’t think that most patients are that aware of the different criteria - they will accept the diagnosis given by their GP or specialist. It’s only when you get involved in some parts of the online ME community that you become aware of criteria - in the U.K. people will be aware of the NICE guidelines. I’ve been in groups on Facebook where a large percentage of participants seem to not know much about ME beyond their own experiences and what they’ve been told by GP, NHS CFS clinics or alternative practitioners. There’s usually a small subgroup who are aware of research/advocacy but a minority.
 
Fleetingly mentioned in this article
In this instance, endometriosis was raised directly because of pandemic delays. However, the parliament focus on the disease is a welcome and not insignificant moment. Crushing exhaustion and agony are difficult enough to manage but lack of awareness is something which can be changed- and societal adaptions accordingly made.

The same goes for a major UK study into Myalgic Encephalomyelitis (ME) announced this week, investigating a widely misunderstood and devastating condition. Worryingly, one of the long-term effects of corona is chronic fatigue symptoms, leaving previously healthy people unable to manage simple daily tasks. ME is thought to be triggered by viral infections, yet the extent of its impact remains underreported, highlighting the crucial need for this study.
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https://www.independent.co.uk/life-...sses-coronavirus-healthcare-nhs-a9585511.html
 
Jaybee00 said:
I know I'm a minority opinion on this, but I do not support having PEM as a mandatory symptom (Yes, I know PEM is required under CCC and IOM). I'm 100% sure I have the syndrome of ME/CFS. I am not 100% sure I have this acute PEM thing. If I have a day with 10,000 steps, the following day(s), I am not guaranteed to be "crashed" and completely bed-bound for days. In general, I have days and periods when I am worse than others, but I am not sure I reliably have this acute PEM symptom. If I was applying for to be a part of this study, I would probably say that yes I have PEM, but I am not really sure if I have PEM as others describe it.
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Please don't assume you don't experience PEM; it is very easy to get the impression that only the more severe symptoms equate to PEM. But I believe it is also about symptom pattern, and how it relates to bouts of exertion, and that PEM severity goes hand in hand with ME/CFS severity. To try and illustrate ...

My wife has ME/CFS, not me, and she is mild/moderate as best I can tell. I'm totally certain she experiences PEM, but it is never anything like as bad as for many on the forum here. She does not "crash" in the car crash sense, and does not end up in bed for days afterwards. But when she does overdo things, the payback comes fairly soon after compared to many here I think - within a few hours, definitely within a day, and maybe lasts a day, less if not too bad or more if she has really done herself in. Her symptom of PEM is basically to feel totally sh*t, as if she is in the thick of a bad dose of flu ... feeling really ill and totally, totally wiped out.

But my wife paces herself very intuitively and successfully, so although I can recognise her PEM pretty much every day, it is often "shallower" than when she has pushed herself harder into her PEM. In many ways it's about the choices she makes, moment to moment. She loves her gardening and quilting, and knows that in doing so she will pay for it later, but she will have days where she lightens up, and does not pay so badly for it, and other days where she is just driven to do stuff anyway, and accepts she will pay for it.

But if she made different lifestyle choices, then she might only experience more lightweight bouts of PEM, and it might be much harder to spot if she experienced PEM at all. I do very much hope that when the DecodeME questionnaires are sent to assess recruitment suitablility, that this aspect will be considered, and as best as possible accounted for. @Andy please note.

So when reading in S4ME of the PEM severities and durations that so many forum members experience here, it would be wrong to try and calibrate your own experiences by that alone, because just like ME/CFS itself, the severity and symptoms of PEM also vary across a whole spectrum, albeit probably linked to some degree to the severity of a person's ME/CFS itself.
 
NelliePledge said:
I don’t think that most patients are that aware of the different criteria - they will accept the diagnosis given by their GP or specialist. It’s only when you get involved in some parts of the online ME community that you become aware of criteria - in the U.K. people will be aware of the NICE guidelines. I’ve been in groups on Facebook where a large percentage of participants seem to not know much about ME beyond their own experiences and what they’ve been told by GP, NHS CFS clinics or alternative practitioners. There’s usually a small subgroup who are aware of research/advocacy but a minority.
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Before 2016 when I joined PR, my wife and I lived in blissful ignorance of all the controversy surrounding ME/CFS, and we still thought the sun shone out of the proverbial 'arris of the medical establishment and NICE. Was a bit of a shock discovering the truth.
 
Barry said:
But if she made different lifestyle choices, then she might only experience more lightweight bouts of PEM, and it might be much harder to spot if she experienced PEM at all. I do very much hope that when the DecodeME questionnaires are sent to assess recruitment suitablility, that this aspect will be considered, and as best as possible accounted for. @Andy please note.
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Yes, thanks, this is an issue that is already very much on my radar as something that we need to take into account.
 
@Jaybee00 i echo what @Barry said about PEM. Like his wife I’m at the ‘mild’/moderate borderline. I experience my worst level of PEM as a flare up of flu type symptoms/laryngitis/swollen glands which means I have to spend more time in bed or on the sofa but I’ve never been so ill I couldn’t get up out of bed for a few hours to make food and watch a bit of tv. Now I have retired due to ill health and moved to a house that’s got a downstairs loo I’m able to manage my energy and exertion levels so I don’t exceed my limits so often or so badly unless there’s something unavoidable or something I really want to do. So my PEM isn’t as bad I haven’t had really bad swollen glands for a long time. But I know it could easily happen without pacing myself.
 
Jaybee00 said:
I know I'm a minority opinion on this, but I do not support having PEM as a mandatory symptom (Yes, I know PEM is required under CCC and IOM). I'm 100% sure I have the syndrome of ME/CFS. I am not 100% sure I have this acute PEM thing. If I have a day with 10,000 steps, the following day(s), I am not guaranteed to be "crashed" and completely bed-bound for days. In general, I have days and periods when I am worse than others, but I am not sure I reliably have this acute PEM symptom. If I was applying for to be a part of this study, I would probably say that yes I have PEM, but I am not really sure if I have PEM as others describe it.
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While we have made enormous strides in finding ways to convey what ME is, beyond chronic fatigue. we still have not got to the nub of it and may never do so until there is more research into the biology.

PEM is fine as far as it goes but it is just a short hand for the way we do not handle exertion properly. We do not know exactly what it is that is wrong but things go badly for us at levels of activity, or just plain living that human bodies should cope with easily.

Too many doctors interpret this as we get tired, but OUR BODIES ARE BROKEN. It is not a premature fatigue that comes on earlier than for someone healthy. (We can only do 2 while they can do 10 before they reach the same point)

The whole process of using energy is different for us.

Back to your post, not being able to do very much and having to rest the next day is common but not the whole story. A delay in experiencing ill effects (often after feeling perfectly fine while doing them) is not unusual and can make it hard for those with milder illness to get the link.

Not recovering for an abnormal period of time is part of PEM and not like healthy people. I went to a wedding in November and the pain only died down the next March despite taking lots of precautions at the time.

The other thing about PEM (if we use that as a generic term beyond what it actually says) is the consequences of exercise are often different from that of healthy people. We experience swollen glands, sore throats and lots of other inflammatory symptoms. I've never heard person without ME say "I dug the garden yesterday and now I feel as if I have golf balls in my armpits."

I am not alone in experiencing PEM in another strange way. I do something but at a point which varies I have to stop for a few seconds, complete halt, few breaths, move on. This happens when I am not doing too well but I don't think it makes me any worse the next day (though I could be wrong. When I am bad it is hard to think and notice things)

Experiencing any of those things suggests you have ME. If you just experience fatigue and don't think you have any of these things, or if you have a different suite of symptoms altogether you may have been misdiagnosed which we know happens far too often. It does not mean you are not ill, or less ill just that it is another fatiguing disease of which there are many.

Though it is just as likely that the way these things are described does not reflect your experience of the disease.

But problems with with energy, shorthanded to PEM is the cardinal symptom of ME and has to be the factor that decides who goes into a trial.

Having said that, I canto go into a trial because of other diseases I have. For a trial you need patients who definitely have all the classic signs. When you get biological information from them it can be used to test people who are not so classic.

Using only participants who have a sudden viral onset then get classic PEM is the best way to get answers for all of us.
 
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