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Open Chronic fatigue syndrome participants wanted for aquatic exercise trial Published 22 February 2019

Discussion in 'Recruitment into current ME/CFS research studies' started by Sly Saint, Feb 28, 2019.

  1. shak8

    shak8 Senior Member (Voting Rights)

    Messages:
    1,253
    Location:
    Northen California
    Even moving in a 94 degree warm pool is incredibly fatiguing. Water exerts so much pressure. If you have muscles that are always painful, and you challenge them by moving through water, not pretty.

    And yes, noisy and crowded. Maybe one could do 5 minutes but why waste all the effort just in getting to the pool. For what?
     
  2. daftasabrush

    daftasabrush Senior Member (Voting Rights)

    Messages:
    157
    Great update MyalgicE - a few points to raise:
    • No mention of severe ME. Do they even accept that some people can't even get into their swimwear, let alone get in a pool unaided? If you've seen Unrest then see what Jessica needed to get in the water. I'm at risk of drowning in my own bath since too weak to support my head and neck properly in the bath. Floats are needed to reduce risk. Also would need a wheelchair from changing rooms to poolside and back - so someone would need to move wheelchairs from the pool side but also fetch the right one back for the right person given they are customized. I presume water, chlorine and electric wheelchairs are a disaster in the making. Ear plugs would be essential - would not being able to hear professionals be an issue? Anything that cannot be done home based is not actually a potential treatment for the core illness process but merely symptom based. Local pool? Haven't even managed the local doctor's for years.
    • The 6 min walk test is an example of a researcher without any knowledge of the illness in my view. Anything that treats only the less ill clearly isn't treating the core illness - it's only rehabilitation for those already recovering or those with fluctuating conditions in a cycle of improving. A 6 min activity test, or 6 mins of self propelling in a wheelchair is more suitable (although that is beyond me and would cause PEM).
    • Hand grip strength is a proposed biomarker - see Luis Nacul's recent paper from the UK biobank project at LSHTM in London - however, this was repeated handgrip strength - so testing strength in relation to the rapid fatiguing
    • Research has shown about 10-20% steadily deteriorate over time. Exercise of any kind appears to increase the rate of deterioration. Even maintaining currently fitness is impossible. NO/ONOO cycle and non-fatigue/non-pain symptoms totally ignored here. I don't think there's any positive neurological effects likely. I bet they can't concentrate better, and that immune and intolerance symptoms are unchanged too.
    • Time floating (supported) in a pool might have great benefits for joints, muscles, flexibility, relaxation and mental health / quality of life - including for the severely ill - this could be a helpful adjunct treatment of accessibility and safety could be sorted (plus sensory issues) - this really should be a comparison arm in the trial.
    With CBT & GET and the Chronic Fatigue patients included in "CFS" trials have they really learned nothing from the PACE trial, the nil result FINE trial and their lack of effectiveness in Britain, plus the patient reports of more harm than benefit?
     
    pteropus, Inara, andypants and 4 others like this.
  3. lansbergen

    lansbergen Senior Member (Voting Rights)

    Messages:
    616
    I was too. Now I can enjoy a bath.
     
    Amw66, MyalgicE and Wonko like this.
  4. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    4,994
    MyalgicE and andypants like this.

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