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EUROMENE - New European research network for ME/CFS funded by COST/EU

charles shepherd

Senior Member
Messages
2,239
Just looking at an old discussion on another forum in Feb 2008 and Dr Derek Pheby was involved with the EUROMENE group. Don't know why he isn't mentioned now - perhaps he is retired?
---
Some more information I had on file:
From the May 2014 newsletter of the Shropshire ME Group. Prof. Derek Pheby presented at their conference in April

I was with Derek last week in London - he is a member of the ME/CFS Biobank Steering Group - and yes, he was a very active member when EUROMENE was first set up.

I don't know if Derek is involved with this current initiative but I have told him about the discussion that is taking place here.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Does anyone know what is going on with the EUROMENE COST network? I haven't seen anything recently but it looks like such a promising effort.

http://w3.cost.eu/fileadmin/domain_files/CA/Action_CA15111/mou/CA15111-e.pdf

The Euromene Cost Action is in progress. The first major meeting will be this month. It is a mechanism for getting European groups together to develop a strategy for research and educational efforts. It does not fund research as such but it is exactly what we need to formalise and budget for regular interaction across Europe. There will be about 6 working groups addressing different issues. In a sense it is a behind the scenes activity but it allows those already collaborating to get together and to build new collaborations. This is not just a matter of promising words, real interactions are going on, but it is hard to report specific milestones at this stage.
 
Messages
2,087
Messages
2,087
This is just the blurb that has to go into any grant proposal and it would probably be suicidal to omit this. You have to play the grant game. However, I can assure you that the people on the Euromene project that I know have absolutely no time for such approaches.
That's good to hear and what i expected - it did look very odd in amongst all the other blurb. Thanks.

ETA Looks like some good people on board :)

http://www.cost.eu/COST_Actions/ca/CA15111?management
 
Last edited:

Cheshire

Senior Member
Messages
1,129
That's good to hear and what i expected - it did look very odd in amongst all the other blurb. Thanks.

ETA Looks like some good people on board :)

http://www.cost.eu/COST_Actions/ca/CA15111?management

Also people with a BPS view:
Mira Meeus
Catastrophizing and depression are the main predictors for pain in patients with CFS
http://www.bodyinmind.org/catastrophizing-depression-chronic-fatigue-syndrome/

Elin Strand
http://drlapp.com/news/me-letter-march-2014/

See the part on the severely ill:

Special considerations include:

  • avoid attributing new symptoms to CFS/ME/FM (rule out organic causes)
  • minimize medication use
  • ‘start low and go slow’ with medications
  • consider liquids, crystals or gummies for medication delivery instead of just pills
  • regular infusions of IV fluids and volume expanders may be helpful for orthostatic intolerance
  • regularly monitor vital signs including intake/output, supine and sitting/standing BP, pain levels
  • keep a diary or journal of daily activity to monitor changes over time
  • engage the patient in wanting to get better and participating in the treatment process
  • establish a consistent pattern of activity and rest
  • establish a regular sleep routine
  • cautiously challenge misconceptions
  • challenge fearful thoughts (perhaps about activity, the future, etc.)
  • address the management of setbacks, which are to be expected
  • consider supportive counseling
  • encourage getting out of bed, or at least sitting upright in bed
  • consider home physical therapy (passive range of motion > active range of motion > light resistance > light aerobic activity)
  • consider occupational therapy to learn energy conservation
  • include alternative therapies (especially mediation/relaxation, self-hypnosis/imagery, massage, balneotherapy, and aromatherapy)
  • most important is to provide adequate nursing, help, and support so that the patient feels secure and tranquil
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
engage the patient in wanting to get better
How incredibly patronizing and offensive.

and participating in the treatment process
And how sneaky to put getting better and the "treatment process" offered in the same phrase as if there is an unquestionable link between the two, even when the treatment includes alternative therapies and BPS bullshit.

most important is to provide adequate nursing, help, and support so that the patient feels secure
With that kind of inapropriate "help and support" being forced on me, secure is the opposite of what I'd feel.
 

worldbackwards

Senior Member
Messages
2,051
Every time I see this thread I wonder what a Euromeanie looks like.

iu

?
 

Comet

I'm Not Imaginary
Messages
693
Also people with a BPS view:
Mira Meeus
Catastrophizing and depression are the main predictors for pain in patients with CFS
http://www.bodyinmind.org/catastrophizing-depression-chronic-fatigue-syndrome/

Elin Strand
http://drlapp.com/news/me-letter-march-2014/

See the part on the severely ill:

Special considerations include:
  • avoid attributing new symptoms to CFS/ME/FM (rule out organic causes)
  • minimize medication use
  • ‘start low and go slow’ with medications
  • consider liquids, crystals or gummies for medication delivery instead of just pills
  • regular infusions of IV fluids and volume expanders may be helpful for orthostatic intolerance
  • regularly monitor vital signs including intake/output, supine and sitting/standing BP, pain levels
  • keep a diary or journal of daily activity to monitor changes over time
  • engage the patient in wanting to get better and participating in the treatment process
  • establish a consistent pattern of activity and rest
  • establish a regular sleep routine
  • cautiously challenge misconceptions
  • challenge fearful thoughts (perhaps about activity, the future, etc.)
  • address the management of setbacks, which are to be expected
  • consider supportive counseling
  • encourage getting out of bed, or at least sitting upright in bed
  • consider home physical therapy (passive range of motion > active range of motion > light resistance > light aerobic activity)
  • consider occupational therapy to learn energy conservation
  • include alternative therapies (especially mediation/relaxation, self-hypnosis/imagery, massage, balneotherapy, and aromatherapy)
  • most important is to provide adequate nursing, help, and support so that the patient feels secure and tranquil
Yikes.