DecodeME - UK ME/CFS DNA study underway

I've had it confirmed that when people join they will have the option of having their camera on but it will not be turned on automatically. They will be muted when they join too. And as I think I've mentioned above, people will be able to post their questions in chat, which will be collated and passed to us by someone helping out.

 

A note about confirmation emails once people sign up. This was meant to be happening, and had been tested successfully prior to our launch. Following the reports that it wasn't happening it was investigated, an issue found and, we believe, resolved at the start of this week. Obviously we would like to know of anybody who subsequently signs up and doesn't get one.

Everybody who signed up should have received an email about the webinar. If you haven't seen this, please check your Junk/Spam folder, and if it's not in there, please let me know.

 

https://twitter.com/user/status/1278258983401332741

 

FYI: I think non-profit organizations have access to unlimted Numbers watcing upon request during COVID-19.

 

https://twitter.com/user/status/1279003976709672961

 

It´s great to see that the numbers of subscribers for this study are growing so fast. I think nobody expected it. If I remember correctly the study should start early next year.
But is it possible that it starts earlier if we reach the goal 40 000 subscribers already in few weeks?

 

Obviously, as nobody has attempted something of this scale in this illness before, we had no idea what the response would be, and it's safe to say that it has exceeded even our wildest dreams.

However, even given how fantastic the response is, there are certain things that will limit how quickly this study can be done.

First, to answer you directly, we need time to set up all the boring background detail that isn't seen but will be vital to our success. We don't start officially until Sept this year, although we are already unofficially working on this - even so, we will need the time to be ready to start early 2021. So we won't be able to start earlier.

The largest amount of time within our projected 4 year timeline of the study is recruitment. Whatever the patient population can do to enhance our efforts to reach out to pwME and convince them to apply to the study can only speed up our recruitment, and once we have 20k samples received and processed, the analysis of the data can be done.

 

Thanks. Email received, but it says it’s from The ME/CFS Biomedical Partnership. Might be a good idea to change the name on the account that’s sending the emails to DecodeME.

 

Thanks, I've highlighted it, although it is arguably accurate for it to say that.

For those who haven't seen it, this is a copy of it.

 

I respectfully disagree with some of this.

1) I don't see any diagnostic criteria where PEM is listed as *THE* cardinal symptom. IOM, CCC and Fukuda all require fatigue as well or in addition other things.

2) I agree with "problems with energy" being common to MECFS. But that could mean different things to different people. If you forced me to lie in bed for 6 months and do nothing, I will still have problems with energy and this is not PEM. People with ME/CFS are sick at rest.

3) Serious question--if people for whom fatigue is a minor issue--if you lay in bed and basically do nothing for long periods, does this mean that you could potentially be very productive with doing non-physical tasks, like writing, etc., while you are resting?

4) Back to this study--I support using wide criteria for almost everything. A lot of people have different symptoms as their cardinal symptom, and some don't have one or two of the critical symptoms. I saw that Jen Brea said that she never had sleep issues--under IOM and CCC she would not have (had) MECFS.

5) If you favor a reductionist approach (sudden viral onset only), then perhaps a truer reductionist approach is that the only people who should go into this study are the people positive for the alleles HLA-C*07:04 and HLA-DQB1*03:03. These folks might be the only people with true ME/CFS, as there is a known genetic signal for their disease. The problem with this approach is that you would only be catching 20% of the total ME/CFS population (i.e. reductionist approaches will not capture the full breadth of the Syndrome). Plus you already know what the likely genetic signal is for their disease. A wider net may catch more fish.

6) If they do a good questionnaire for this study, then all the noise should be sorted out. Maybe people with no sleep symptoms but everything else have problems with allele X, people with PEM dominance with minimal fatigue have issues at allele Y and people with people with fatigue dominance have allele Z problems. With a study this large I believe that there should be sufficient scope to look at all this, and therefore I advocate for less strict inclusion criteria.

7) If there is concern about MECFS fatigue being confused with other fatiguing diseases, there could be a check off list for this study to ensure that people were screened for other fatiguing diseases like MS (did you have an MRI to rule out MS?), etc...

 

@Jaybee00 This sounds like my early mild years of ME. Severe and very severe ME will leave you in no doubt about PEM.

I survived many years of hard-hitting PEM. I don't like talking about those years because it nearly did me in, that's how bad it can get. Having experienced it I understand the importance of it in criteria. It's not like we are fatigued, the problem is that we just can't do normal activity because something triggers PEM making us sicker.

PS, I hope I used criteria in the right way here!

 

Absolutely agree with this @Mithriel The patients who are too ill to be here on the forum and desperately ill would want no less from us. These are the patients we have to fight for - they are living the severe hell of PEM. I couldn't bear to go through those years again.

 

ME as described from the epidemics had problems with energy as the cardinal symptom. That is why we knew we had ME. Then CFS was invented (it did not match the symptoms of the epidemic the CDC were there to investigate)

The US then saw fatigue, which was a minor symptom of ME in the same way as it is in MS - most people have it to some extent but it is not the thing which distinguishes it from other diseases - as the main symptom of the disease.

In the UK, Wessely used the opportunity to say that ME was actually hysteria or neurasthenia (he ignored the epidemics altogether). Then a group of psychiatrists got together, ignored the specialists who had been researching ME for years and said it was now CFS, but different from the US CFS. Which was strange considering Sharpe had had a hand in both definitions.

As new people got involved, they all took fatigue as the basis of the disease and when it became fashionable to define a disease instead of describing it fatigue still stayed at the forefront. Thanks to a lot of work by a lot of people ME was not forgotten altogether but we are barely back to where we were in 1984.

If you are dealing with a disease called ME/CFS you have to have the cardinal symptom of ME, energy problems. If you just have fatigue it is CFS which could be anything. There was no scholarship involved in dropping the energy problems, they were just ignored but we are slowly making headway to get back to the knowledge we had before Straus and the BPSers used us.

Making fatigue the main symptom was a disaster for us as no one knew what disease patients had when they did research. I refuse to go back to those days as it is the reason we have had little progress in 35 years.

It may turn out we get a test which says I don't have ME but I will take that chance.

 

I'm confused about the difference between the two. How do you distinguish between energy problems/fatigue? Surely what I call 'fatigue' might be what you call 'energy problems' and visa versa? Fatigue is a very broad term that's generally used to describe a whole host of different sensations including lack of energy.

In daily life, I use the word 'tired' to cover a lots of symptoms because I lack better words to describe how I feel but I am aware that what I call 'tired' is very different to what a healthy person calls 'tired'.

 

Yes me too. It gets so overwhelming and particularly when I talk to people, “I can’t, I’m too tired”, “I’m too tired to brush my teeth”, “I’m too tired to talk”. I say this all the time. My family knows what I mean. And from the beginning I said to my GP I feel so tired, so Ill. It’s hard to find words for what you feel.

 

People with ME get worse with exercise. There is a grey area at the margins where people who are pacing very well will not get it unless they decide to take up jogging and at the other extreme someone who is incapacitated by dysautonomia or something else may not be able to do enough exercise to get the bad effects.

Dr Bell of the Lyndonville epidemic said his patients felt well as long as they were lying down. I have got much worse now, but I used to feel fine until I did something. The point at which I felt bad varied but doing things was what made me ill.

Of course, there were other things going on like noise sensitivity but that could be said to be the exertion of coping with noise.

I am sorry it is confusing for some people, I blame the BPSers who deliberately introduced confusion, but for trials we need the patients who have the clearest symptoms. This is true for every disease not just ME. There are research definitions but also diagnostic definitions which have much more leeway.

Once a marker is found in the clearest cases other people can be tested for that. In myatonic dystrophy, people who were classic cases of the disease were shown to share the same gene defect but now people who have very varied presentations are tested for the gene and they know that the disease is very underdiagnosed.

 

The IOM defined PEM as an exacerbation of some or all of an individual’s ME/CFS symptoms that occurs after physical or cognitive exertion and leads to a reduction in functional ability, that is why they called it systemic exertion intolerance disease.

 

Dear @Mithriel,

When describing MECFS symptoms, I prefer it if you put them in personal terms, e.g., using "I" statements, and to please try to avoid generalizing over what you feel the true symptoms of ME/CFS are. If you feel that fatigue is a minor symptom for you, that is wonderful, but it is also your experience. It is also not the experience of most of the members on this forum...see this poll here--only 27% of the respondents said fatigue was a minor component of their illness. https://www.s4me.info/threads/poll-...-say-fatigue-makes-up.8340/page-2#post-146885 and the most popular answer was that fatigue is 75% or more of their illness.

As I mentioned in my previous post in this thread, there are already two known risk alleles or genetic markers for MECFS, see here https://www.s4me.info/threads/human...syndrome-me-cfs-fluge-mella-et-al-2020.14329/ but they only account for about 20% of the people with ME/CFS. Hopefully, this study will find some useful data from the 80% of patients who do not have these two risk alleles.

If there are 10,000 patients in this study, I hope that they can sample patients with a wide variety of symptoms and triggers (not just the "clearest cases")--people with lots of PEM and no fatigue, as well as people with minimal PEM and a lot of fatigue. Mild through very severe. I hope that they sample people with viral onset, bacterial onset, fungal onset, tick onset, iatrogenic onset and no known onset trigger. I hope that they sample people more awake at 4AM than 4PM and vice versa, etc.

 

In light of recent comments, I thought it might be useful to highlight the following:

To enter into the recruitment process, any potential participant will have to confirm that they have received a clinical (so in the UK, most likely from a GP) diagnosis of ME (or CFS, ME/CFS or CFS/ME).

To progress through to the sample donation stage, any potential participant's questionnaire answers will have to indicate that they meet CCC and/or IOM, both of which require PEM.

The exact detail that will be asked of the potential participant, outside of what is needed for the above, is still being worked on - obviously we would like to collect as much information as might be useful while also making it as easy as possible for as many to complete.

 

Syndrome de fatigue chronique : une étude génétique pour comprendre son mécanisme
https://fr.news.yahoo.com/syndrome-...ique-pour-comprendre-mecanisme-131838336.html

Chronic fatigue syndrome: a genetic study to understand its mechanism
https://translate.google.com/transl...ique-pour-comprendre-mecanisme-131838336.html