Discussion in 'Recruitment into current ME/CFS research studies' started by Andy, Aug 21, 2019.
This is welcome and imo long over due.
They say it’s not a primary factor in diagnosis but it becomes a marked feature as people become severe. For me a question on severity of participants might be important, ideally there would be some severe involved too if they can get to the hospital for the testing etc.
What are the recruitment criteria?
I hope they will include severe people who can't travel to do the tests.
Great provided they use proper criteria and patients that suffer from sensory overload! I had it when I was moderate. Now I am severe it can be quite bad some days.
Reading it I don’t think the severe would be able to do the testing on top of a journey to outpatient clinic , maybe some could. My concern is that previous cognitive testing on mild-moderate really hasn’t reflected or recognised the major problem it can become in the severe and people who can tolerate moderate normal exposure to daylight are different to people who can tolerate none. It did say that the community they met with expressed that it impacted on their life so presumably there will be some degree of hypersensitivity experienced which could indicate mechanisms involved, but the degree I experienced at 70% function, hypersensitive to car headlights at night etc is vastly different to what I now experience ....
Yes I agree. On a test looking at sensory processing I am worried as to how looking at milder patients won’t really reflect the reality that sensory processing can become.
Is there a way to discuss this with the people doing the study?
Just had another look. As it’s a pilot study, I wonder if that means if they find differences between healthy controls and those with M.E (which of course they will), then they’ll possibly do a bigger study at which point they may do home visits for severe M.E?
Maybe they’ll be interested in doing one of your q&as @Andy
It’s one of the worst things when I’m really bad, sensory overload. Horrible.
Hopefully it's well-executed. This is an important and understudied area of research as it is one of the most limiting problems. In far too many cases it even makes it impossible for severe patients to have carers, which they badly need, because they simply refuse to adapt to simple accommodations that aren't formally put into guidelines.
It's also a serious barrier for access to health care, including for unrelated reasons, as medical facilities are chaotic, noisy and way-too-brightly lit places. I will avoid going to a clinic or hospital until I am about certain it may lead to death or permanent damage as it's usually not worth the long-term damage it may cause.
It also leads to serious abuses by medical personnel, as we see with psychiatrists who simply dismiss it and force onto their patients the equivalent of loading up diabetic patients with sugar.
Not quite as important but it also leads to serious degradation of quality of life, making things like human contact, enjoying music and other things that give life some color. And it is entirely unknown by the vast majority of medical professionals, while the luminaries who have hijacked our disease are completely unaware of it and simply reject it as it exists, preferring instead their made-up explanations.
A very quick search for studies on post-concussion + both investigators delivered these 2 results (only Sanjay Kumar as co-author):
KUMAR, S. , RAO, S. L., NAIR, R. G., PILLAI, S. , CHANDRAMOULI, B. A. and SUBBAKRISHNA, D. K. (2005), Sensory gating impairment in development of post‐concussive symptoms in mild head injury. Psychiatry and Clinical Neurosciences, 59: 466-472. doi:10.1111/j.1440-1819.2005.01400.x
Sanjay Kumar Munjal, Naresh K. Panda & Ashis Pathak (2010) Relationship between severity of traumatic brain injury (TBI) and extent of auditory dysfunction, Brain Injury, 24:3, 525-532, DOI: 10.3109/02699050903516872
The researchers are aware that requiring volunteers to come to the testing site at Oxford Brookes will rule out the more severe. The issue is the equipment, which is not portable. So they are hoping for volunteers very either from or close to Oxford and have funding for taxis if needed to attend. There is also a rest space available.
Crikey this is great news... if they get the selection right.
I really hope they will screen for people who's sensory processing issues make them ill or cause PEM, as opposed to people who are 'sensitive' to, for example, noise/crowds/overload because it upsets them or makes them feel anxious.
- I have a friend who gets very worked up in bright lights & crowded places & she will say she can't tolerate it. She cant cope with it all, doesn't like it & makes her feel very panicky - but she doesn't have ME she has depression & anxiety disorder. She she can listen to loud music for long periods without issue as long as it music she likes.
But she still thinks our sensory issues are the same, I've tried to explain that it doesnt upset me, it in effect gives me the flu, plus excruciating pain drunk/drugged/sedated/dementia. But she can't hear what i'm saying, just filters it through her own experience that she knows about.
That's what concerns me. These researchers working on post concussion syndrome is encouraging, but, no disrespect to them, sill they be able to sift out the ME related sensory issues, from the anxiety related ones. I appreciate since we don't have a marker for either, that is all based on descriptions, but if you listen to a severe sufferer talk about their sensory stuff the way they/we describe it is quite different than anxiety disorder sufferers, but one has to listen closely to the description.
For research purposes I don't think it would be helpful to risk catching those who, while they may well have ME/CFS or at least an appropriate dx of it, but have reduced tolerance to sensory overload for emotional/psychological reasons. I'm not minimising anxiety or psych issues at all, I just want a cohort that actually has the sensory processing issues that are more likely to be specific to ME rather than more general sensory sensitivities for other reasons, (I know that without a marker we cant guarantee whats caused by what but we have people's descriptions & experiences & can do our best to test people who are as homogenous as possible). We don't want the waters muddying especially with such a small cohort, and if they are only able to test milder sufferers it could be difficult to distinguish. I think a key screening tool would be
"does bright light/sound upset you emotionally and or make you feel panicky?" If they answer yes then they should consider excluding them.
(ETA - perhaps that question not worded well I hope people know what I driving at)
I appreciate that the suffering caused by sensory overload, naturally can make some people anxious as well as making them ill, but research cohorts need to be as pure as possible. Same as we should screen out depression for research subjects despite ME often leading to naturally to depression.
Hope that makes sense/comes over ok it's late & i'm foggy
Seems they are still looking for participants.
You don't have to be in the UK to participate in the online interview part of the project. International participants are welcome.
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