Fundraising: Manchester (UK) Primary Care research: Exploring Trauma & Distressing Experiences Following Medical Encounters.

https://www.wonderful.org/fundraiser/highlightingtraumafrommedicalencounterswithme-b89a2139?sfns=mo

We're raising funds for the above research. Dr Adeniji is new to the field but his senior supervisors are not. A Professor of GP and a trauma psychologist will provide advice.

This preliminary study will attempt to turn anecdotal reports of emotional trauma into facts and figures. Not an easy task.

One could argue that doctors have been misled for decades by the CBT/GET cult and aren't fully aware of the harm they cause.

We have to fund it ourselves, otherwise it doesn't happen.

Please share. Thank you.

 

https://twitter.com/user/status/1160237445339914240


eta: details here
https://www.wonderful.org/fundraiser/highlightingtraumafrommedicalencounterswithme-b89a2139

eta2:

 

I'll get back to you soon.

 

Assembling this information into a study would be very helpful in highlighting the fact there is little understanding or help from many in the health professions.

The average person, or the average politician may find it very difficult to believe that a significant percentage of pwME are treated so poorly by those in medicine, and that this is happening world wide.

 

I've mentioned some of my personal experience before: being yelled at - "There's no proof", being lectured about sleep hygiene, and queried as to whether I need (or deserve) biomedical treatment, being treated rudely because I have "cfs", yelled at: "Aren't you better yet?!", and on and on it goes.

If many of these types of encounters were collected, it could be shown this is a pervasive problem. Not just a couple pwME complaining.

 

IMO even the more well meaning medical encounters should be included in the study. Such as the one I had re terrible GI pain: "I can't find anything wrong. How's your home life?" These responses are not helpful, indicate a belief that stress or some other psychological problem is to blame for a very painful physical situation. The patient goes away with another letter on their file saying their illness is all in their head.

 

Sorry I can’t get on here much, just replying when alerted elsewhere.
Hope this helps
“Telephone interview - minimum
20 patients - more if time and resources permit

We are yet to work out selection but most likely and convenience sample

Patients need to confirm a diagnose of ME - CFS by medical practitioner -

No protocol needed

This is exploratory research social psychology field - new ground needing what we can “a grounded theory approach “
To build understanding of the issue in order to inform and improve medical care and encounters”

 

If this is exploratory research, wouldn't an online survey with 'free text' boxes that can be filled in to elaborate as necessary, be an inexpensive way to generate a broader understanding of the issues? Many people with M.E. can't manage phone calls (although some do prefer this over typing).

 

https://twitter.com/user/status/1162436548211728385

 

I’ve had this. I was lying in bed unable to sit up and I was asked, “so do you get counselling?”

To which I managed to whisper out.. I can’t really talk, to do counselling you know..

 

Can someone talk on our behalf?

 

I was teaching a lawyer last week, who was telling me about how she had fired a client, because the client never listened, never took her advice or stuck to what they agreed was the best approach, and kept doing google searches and coming to appointments with printouts supporting her view of what the law should be.

The lawyer spread her hands and said to me "Well, you wouldn't do that if you went to a doctor, would you?"

 

We have a pledge of £2000, so we only need £900 to reach our target.

This is a baseline study which hopefully would lead to something larger with scope for different severities to participate.