# Understanding the different phases of CFS (also applies to FM, IBS etc)



## Susan Purry (Nov 6, 2001)

I just read this article on the Co-Cure website. It describes stages of illness - it's about CFS, but I think might equally apply to any other chronic, disabling condition which is little understood and much misunderstood by doctors, friends and family.It's at: http://www.co-cure.org/phases.htm and is called Understanding the Different Phases of CFS, by Patricia A. Fennell, CSWAlbany Health Management AssociatesA Brief summary is:


> quoteHASE Iï¿½TRAUMA/CRISISPhysical:ï¿½ Coping stageï¿½ Onset stageï¿½ Acute/emergency carePsychological:ï¿½ Loss of control, egoï¿½ Shame, self-hatred, despairï¿½ Shock, disorientation, dissociative statesï¿½ Feelings of isolation, mood swingsSocial:ï¿½ Others experience shock, disbelief, revulsionï¿½ Friends and family traumatized by association with patientï¿½ Social response evolves, family organizational maturationï¿½ Range at responses from support to suspicion--------------------------------------------------------------------------------PHASE Ilï¿½STABILIZATIONPhysical:ï¿½ Plateauï¿½ StabilizationPsychological:ï¿½ Increased caution, social stigmaï¿½ Social withdrawal, searchingï¿½ Service confusion (seeking new care providers)ï¿½ Boundary confusion (can't do what they used to)Social:ï¿½ Increased conflict or cooperation with othersï¿½ Friends and family feel social stigma by associationï¿½ Trauma of illness felt by those close to patientï¿½ Failure to become ï¿½normalï¿½ again--------------------------------------------------------------------------------PHASE Illï¿½RESOLUTIONPhysical:ï¿½ Emergency stage diminishment! Improvementï¿½ Continued plateau, stabilizationï¿½ Possible relapsePsychological:ï¿½ Grief reactionï¿½ Self-compassionï¿½ Crisis of selfï¿½ Role/identity experimentationï¿½ Returning locus of controlï¿½ Awareness of societal effectsï¿½ Spiritual developmentSocial:ï¿½ Patient breaks silence, feels associated stigmaï¿½ Confrontation with detractorsï¿½ Role experimentation (social, vocational)ï¿½ Supporters either separate from or integrate with patient--------------------------------------------------------------------------------PHASE IVï¿½INTEGRATIONPhysical:ï¿½ Recovery stageï¿½ Continued plateau, Improvement or relapsePsychological:ï¿½ Role/identity integrationï¿½ New ï¿½personal bestï¿½ï¿½ Continued spiritual/emotional developmentSocial:ï¿½ New and reintegrated supporters emergeï¿½ Alternative vocation/activities explored


It might be useful to read for people who are dealing with how the chronic illness and disability affects their lives, and any changes happening in their lives because of the illness and disability.


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## squrts (Aug 14, 2000)

thanks suan,i think somewhere under phase I might be better understood as denile/running/hiding,resulting it secondary illness-addiction.im wondering just how common this secondary illness is with these illnesses.does anyone know?


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## trbell (Nov 1, 2000)

interesting information, Susan. Is there anything about degree of illness?tom


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## K9Mom (Sep 20, 1999)

Thanks for sharing this Susan. I plan to post it in the Graves forum also.


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## Susan Purry (Nov 6, 2001)

Hi Tom. For degrees of illness, you may find an extract from Dr Charles Shepherdï¿½s book called ï¿½Living with M.E: the chronic /postviral fatigue syndromeï¿½, page 117 useful. It is a scale he developed for people to assess their level of dis/ability. He says:


> quote: ï¿½you should find that one of the percentage figures in the left-hand column corresponds to your usual state of health. There will also be one or two percentages above and below this figure to where you fluctuate during good and bad periods of healthï¿½ (p. 116).





> quote:*ME/CFS Disability Scale*
> 0% Fit and well for at least the past three months. No symptoms at rest or following activity. Capable of full-time employment.
> 10% Generally well. No symptoms at rest. Occasional mild symptoms may follow activity. Capable of most forms of full-time employment.
> 20% Occasional mild symptoms at rest. More noticeable symptoms following activity. Some restriction of capabilities which require physical exertion. Able to work full-time but difficulty with work that requires physical exertion.
> ...


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## Susan Purry (Nov 6, 2001)

There is another scale here, which in my view is not so helpful: http://cfidsselfhelp.org/Rating_Scale.htm


> quote: *CFIDS/Fibromyalgia Rating Scale*
> 100 Fully recovered. Normal activity level with no symptoms.
> 90 Normal activity level with mild symptoms at times.
> 80 Near normal activity level with some symptoms.
> ...


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## Susan Purry (Nov 6, 2001)

This relates to the 'stages' of illness that I posted about originally. It is an article called "*Roadmap for Chronic Illness*" and can be found at: http://cfidsselfhelp.org/artcl_roadmap.htm The sections of the article are: 1) Impose Limits2) Affects Many Parts of your Life3) Brings Uncertainty4) Varies Greatly in Severity5) Varies Depending on Your Life Situation6) Will Be Affected by Your Response


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## Guest (May 25, 2002)

Naturally we all respond differently. Mostly, I have responded to my IBS, CFS and FMS with ANGER. I am in therapy to help me deal with my anger. This probably sounds pretty basal.... but I've found that taking calcium/magnesium is tempering my moods. I feel a bit calmer and less agitated.


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