The Times: Infectious diseases expert warns of spike in ME cases

Do you think? I'm just wondering, wouldn't that risk encouraging people without a diagnosis who may have chronic fatigue for other reasons to sign up? I might be wrong, just my initial response.

 

People who don't have ME/CFS will be screened out at the questionnaire stage, so it's not a problem if they do sign up. In order to reach as many ME/CFS patients as we can, we need to put the wide call out. It's OK if other people are caught up in that first trawl.

 

I agree what others have said above, but I think it's also got horribly tangled up with the symptoms of clinical depression.

Some patients experience a profound sense of inertia, and remain immobile all day for extended periods because they're unable to force themselves to move. As deconditioning may make them feel very fatigued, and being active often helps as part of treatment for depression, gentle encouragement to get moving can be a supportive approach. If you really believed that depression plays a major role in ME, it would make complete sense to include it in programmes of talking therapies plus exercise.

The problem, of course, is that we've known for decades that people with ME have exactly the opposite problem – they need to be steered away from carrying on with levels of activity that their bodies can't sustain.

 

I don't know whether I should contribute to the answers to the question on anxiety in case it is not strictly on topic, but here goes. The Wessely /Powell paper from 1989 is of interest because they appeared to conclude that something like a quarter of the trial subjects, I forget the exact figures, appeared to suffer neither anxiety nor depression. Most reasonably minded people might conclude that this was a refutation but it was apparently not sufficient to quell the enthusiasm for the idea. It is hard to escape the conclusion that to advance one's career as a psychiatrist it would have done no harm to espouse the opinions of Goldberg.

 

The reasoning is always strictly: we cannot find a physiological cause for it and assuming we never will, it MUST be psychosomatic. There is no evidence that does not rely on this logical fallacy. Everything that is built around behavior assumes that the behavior MUST be abnormal since a biological cause is denied, not simply that we don't know but that it is assumed that none will ever be found.

It's a god of the gaps argument, a logical fallacy defaulting to a belief system that has been debunked many times before. Nothing short of criminal negligence.

 

Further to Sasha's response, the first question we will ask is does the potential participant have a clinician's diagnosis of ME or CFS, before letting them attempt CureME's questionnaire. So it's unlikely, although not totally impossible, that someone who doesn't have ME will get through to the stage of giving a sample.

 

From what I understood, they can just tick yes or no to the clinicians diagnosis, but don’t have to provide proof. (I understand why you’ve done this, to make it easier to participate), but essentially, couldn’t someone just tick yes to the diagnosis, and then go on to the questionnaire, and knowing what symptoms are required for a diagnosis, they can tick the relevant symptoms? Which would allow them to participate?

This does worry me a bit. Wouldn’t it be easy for people to join in when they don’t have ME?

 

Sure, but how many people will be motivated enough to do all of that if they don't have an ME diagnosis? I'd argue that, even if it does happen, the numbers will be tiny in relation to the 20k total and therefore have a negligible effect.

 

We're trying to challenge when and where we find inappropriate information - there are some COVID resources on our website so you can direct people there for more information. And we did a webinar for the Chartered Society of Physiotherapy last night on the subject of PVF, PVFS and ME - it had over 200 people online and should go live v soon. Plugging away bit by bit!

 

What you're doing is great, but something needs doing at a national level to catch all the new patients.

 

And I hope you don’t mind us tagging you in posts/tweets etc, as and when we spot them?
Thank you all, thoroughly enjoyed your podcast with Dr S.

 

I will do that when I next go on the times. (P.S I also am not a normal subscriber usually - I signed up as a subscriber for now because of their ME articles, it’s actually free and possible for anyone to sign up now because of their 1 month free trial! )

 

Brilliant what you are doing; thanks so much........
unfortunately we still have the 'experts' spreading the 'wrong' message
see
https://www.s4me.info/threads/possibility-of-me-or-pvfs-after-covid-19.14074/page-29#post-269441

 

Wasn’t the Times going to be publishing articles on ME every day for a week? But I didn’t see any articles yesterday, and I can’t see any today online.

can anyone else see any?

 

Please do tag us - it is great to have you all helping us. We are really appreciative of all the support we are getting from people with ME and are learning so much from you all. Thank you for the positive feedback about the podcast - we are planning to do some more so please let me know if there are any topics you'd like to us to cover