Helpful guides for us and our practitioners?

Gentle hello, how are we today?

I'm just wondering which guides/resources we've come across are proving most helpful, to both manage and treat Ramsay's disease (also known as SEID, ME/CFS) both for us and our practitioners?

Wondering if helpful for us to gather the best ones we know of here (in one place)?

The ones I'm conscious of, that (from my perspective) feel helpful until research sheds any more light are:

1). Guide from Dr Lerner (US)

treatmentcenterforcfs.com/d...

2) Guide from Dr Smith (UK)

me-cfs-treatment.com/more-i...

NB..mostly suggests very gentle pottering (...for us to adapt to our varying natural levels...because some of his ideas are way beyond most of us, yet the spirit and intention feels a relaxing one). Also recommends containing computer time eg say to 5-10 minutes at a time, because of energy costs of visual processing.

3) IOM clinician guide:

iom.edu/~/media/Files/Repor...

Do you know these, I wonder? Any others to add?

Warmest thanks for any input....and very good luck for all of us, first of all for the day itself...and also, gently going forwards, with figuring out our priorities for ourselves and any next steps with our practitioners.

Warmest wishes, RockRose

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  • International Consensus Criteria

    meassociation.org.uk/wp-con...

  • Thanks so much, Ian, feels very helpful.

  • I have kept SHINE protocol bookmarked endfatigue.com/treatment_op... as much for my own information as my doctor. Makes sense for me when the doctor often seems confused.

  • Appreciating so much Seascape, thank you and from initial glance looks so clear and helpful (and new to me, so will gently learn from this)

  • Nothing new I can share in a very thoughtful cause bringing hope and education into society that chooses forgetting our existence. Tai Chi when I can trying to meet Dr Smiths pottering that paints a room well maybe in my dreams one day :-)

  • So beautifully said, Slowmotion. And t'ai chi so gentle-flowing, when possible.

    You know, I had to chuckle too at the 'Himalayas' that Dr Smith's 'painting a room' conjures...

    Perhaps more like painting an exquisite feather...

    Yet 'pottering' feels relaxing-gentle and so in that spirit gently onwards with all healing :-)

    Gentle hugs

  • This paper will:

    Define ME/CFS

    Explain why ME/CFS is not a psychiatric disorder despite that a significant subgroup of patients have psychiatric diagnoses.

    Outline how to differentiate the symptoms of ME/CFS from those of depression and anxiety.

    Suggest a treatment approach for common psychiatric symptoms in patients with ME/CFS.

    Summarize psychological treatment issues in patients with ME/CFS.

    Explain issues relevant to children and adolescents with ME/CFS.

    Discuss the treatment issues of drug sensitivity and the utility of Cognitive Behaviour

    Therapy and Graded Exercise in patients with ME/CFS

    emerge.org.au/wp-content/up...

  • Thanks so much Ringading, and valuable reading, especially for helping clinicians' understanding on the areas you outlined for us.

  • PS I love your icon / photo Ringading (a blue bell perhaps..so graceful and beautiful) :-)

  • ME Association purple booklet

  • Thanks, BagEnd, so appreciate

  • Thanks so much KMC422, feels valuable to see the explanation of the condition, by a consultant immunologist, alongside UK NHS diagnostic and referral guidelines.

    From an initial skim-through, I'm noticing that more is said about treatment for those with mild /recovering CFS/ME than moderate, severe or extremely severe cases, so probably overall most valuable for clinicians at initial presentation and diagnosis, enabling most appropriate referrals and helping eliminate other possible factors behind the fatigue (which also feels vital to pick-up). Thanks again and much appreciated.

  • IOM Clinicians Guide a game changer for sure.

  • Thanks and valuable, Peter-J

  • I am slowly trying to make my way through all the things you all have shared that I hadn't already read and used.

    Here is the most useful information and guidance I have found lately. I wish I had it from the beginning of my illness. I might not be so sick now.

    cfidsselfhelp.org/library/8...

    Bruce Campbell has designed a variety of instruction lessons and helpful recording and self-assessment tools around pacing.

    It is a big task for me, but I recognise that this is the kind of methodology that is going to be most useful as I try to pace. Until now, the instruction to pace myself just resulted in me feeling overwhelmed and confused, and also not a little bit rebellious.

  • Oh Budgiefriend, I love your honesty, and sharing the experience of initially or sometimes feeling overwhelmed and confused and also not a little bit rebellious. Yes, I get that so much (and admire the spark and spirit !)

    This feels a fantastic resource for understanding pacing and I love when he says:

    "A second way to think about, and live within, limits is called the Fifty Percent Solution, described by William Collinge....Rather than challenging your limits, you keep your activity to a safe level. The unexpended energy is a gift of healing that you give your body. Collinge's idea is a clever way of addressing our tendency to overestimate what we can accomplish. Another benefit is that it gives you permission to take care of yourself."

    I feel the wisdom and the absolutely sane and encouraging tone...And, recent experience tells me it can make a difference, along with sound nutrition and real rest and more.

    Thanks so much Budgiefriend :-)

  • mostly unrelated note: Listening to Andrea Bocelli puts me in a good relaxed mood as he often straddles the line between serious opera and pop, with a rich, warm, full sound that just makes me feel nice and happy. I turn off my music critic (mostly) and just enjoy it.

    I highly recommend that each of you make a list of the things you know are going to create these emotions and physical sensations for you. Use it as a 'first aid kit' and indulge generously!

  • Beautifully said, hear, hear, Budgiefriend...a welcome note indeed !

    I love the idea of a 'first aid kit' where the instructions are to indulge generously !

    And wonderful about feeling nice and happy listening to Andrea Bocelli, (whose sound and music feels so heartfelt to my ears).

    Encore, encore, for enjoyment and relaxed pleasure feel lovely in the mix !

    Hugs for you Budgiefriend (and a hug for friends visiting this page who'd like one)

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