Ok, let's take a look at the "Activity" section of your protocol:
You link to http://www.iacfsme.org/CFSandExercise/tabid/103/Default.aspx in suggesting recumbant exercise, but have ignored much more important advice - that research has suggested that ME patients must remain under a certain heart rate to avoid triggering a pathological response. Subsets are also discussed, with the realization that while some cases more similar to fibromyalgia might be able to improve somewhat from exercise, and that others will suffer severe relapse. It seems inappropriate for you to give the same advice to both groups, especially since your advice is only potentially applicable at the very mild end of the spectrum and very harmful at the other end. That source also specifies that all symptoms should be gone in the morning, not after "12-24 hours" as you stated above.
Do you have a citation? I've seen no good research showing GET or other activity to aid in recovery, and plenty of research showing it doesn't help, and some showing that it's quite harmful. Pretty much every PWME I've spoken to finds any increase in activity to cause setbacks.Virtually every PWME who has recovered or is in remission will tell you that restoring physical functioning and strength is an integral part of a successful recovery strategy.
Citation? Many people do stabilize activity levels before attempting GET (that's how it usually works in the clinics), and it is still harmful and not helpful for them.It is important to bear in mind that if you try to push yourself before your health and energy levels are stable you may do more harm than good however
The sources cited are an article and a hypothesis. There seems to be no research demonstrating Rowe's hypothesis to be accurate. Furthermore, ME patients are rarely completely inactive except in the most severe cases when there is very little ability to move. It also does not follow that GET is the appropriate alternative to complete inactivity, even if complete inactivity did exist.ME/CFS and OI expert, Dr. Rowe, would appear to agree with Plato: “complete inactivity has tremendously deleterious effects on the body”
I see no citation for Rowe advocating any of these treatments. Furthermore, many patients find the exercise-based therapies to be harmful, and many studies have shown them to be of no help in physical functioning. SSRI's also affect many patients badly.He [Rowe] suggests therefore that physical activity is likely to be better tolerated, and the intensity of some ME/CFS symptoms reduced, if one focuses on improving peripheral movement restrictions by pursuing:
- Manual physical therapy e.g. neurological physiotherapy & neuromuscular massage
- Cranio-sacral Techniques (subtle techniques typically associate with osteopathy)
- Myofascial Release in the direction of ease (soft tissue therapy)
- ‘Functional Technique‘ (encouraging greater general flexibility and motion)
- ‘Strain & Counter-strain‘ (direct nerve mobilisation)
- Exercise-based therapies e.g. gentle stretching, yoga and Tai Chi
- Optional Complimentary Practices:
- Non-Pharmacological treatment of OI, as appropriate
- Cognitive Behavioral Therapy (CBT), as appropriate
- Medications, as appropriate e.g. SSRI/SNRI, anti-convulsants
Citation? You seem to be suggesting that worsening symptoms should be ignored as a sign of illness, which is highly irresponsible given the damage that often results.The manual physical therapy techniques (listed in order of lowest intensity above) and exercise-based therapies are likely to elicit a worsening of symptoms in the following 12-24 hours initially, until nerve ‘glide’ is improved, better tolerated, and thus the stimulation the sympathetic nervous system through physical activity is reduced
Citation? I believe most research has disproven this hypothesis.Hyperventilation/hypo-inflation of the lungs and hypocapnia (low Carbon Dioxide absorption) are often found to be an issue in PWME.
The activities listed are not suited for moderate ME, which is still highly disabling. And even moderate ME patients will have priorities for their energy that have a more beneficial impact upon their lives - such as cooking dinner, going shopping, or even socializing. I also see no citation showing their effectiveness, and again, they are suggestions which many patients have found harmful.Activity options: Below is a range of activities listed in order of lowest intensity, for those who have mild to moderate ME/CFS to consider, once they have done the groundwork:
You link to http://www.iacfsme.org/CFSandExercise/tabid/103/Default.aspx in suggesting recumbant exercise, but have ignored much more important advice - that research has suggested that ME patients must remain under a certain heart rate to avoid triggering a pathological response. Subsets are also discussed, with the realization that while some cases more similar to fibromyalgia might be able to improve somewhat from exercise, and that others will suffer severe relapse. It seems inappropriate for you to give the same advice to both groups, especially since your advice is only potentially applicable at the very mild end of the spectrum and very harmful at the other end. That source also specifies that all symptoms should be gone in the morning, not after "12-24 hours" as you stated above.
These calculations are likely over-simplistic and contradicted by actual research. They are recommending I get my heart rate up to over 140bpm, while the research indicates most ME patients need to stay between 90 and 110. 140 would be guaranteed to put me into a crash, and a bad OI day I'll be over 110 just sitting up.Going beyond a level 1 heart rate ceiling (50-60% of your maximum potential heart rate) is to be avoided at all stages of recovery. It is important to bare in mind that some will find even relatively mild activity puts them over this ceiling. Here is a handy ‘level’ calculator and here is further detail re: where to draw the line and why
Do you have a citation that this is appropriate for ME patients? Sitting without my feet up for a length of time can cause extreme OI problems. Much as a sore back is unfortunate - and I do get one at times - lack of oxygen to my brain is far more unpleasant.Healthy seating: Use an air cushion (to provide mobility), in combination with a reclined seated position or, a high stool (to mitigate against nerve tension by keeping hip flexion at <70 degrees).
I'm not going to argue about standing still really sucking, but lying down is necessary for many ME patients with OI issues. The alternative is called "passing out", and periodically laying down throughout the day can help prevent OI symptoms from becoming aggravated. Do you have any authority to cite for your assertion that lying down should be avoided.PWME must therefore take a two-pronged approach to managing OI: avoiding prolonged periods spent standing still and avoiding lying down as much as possible during the day
Citation?Many PWME wake with a headache and this may, relate to cerebral hypertension induced in a supine sleeping position, another reason not to oversleep!
This may be good advice for people with simple OI problems uncomplicated by ME problems, but I have seen no research indicating it is useful for ME patients. Citation? My personal experience and what I've heard from other ME patients is that typical advice for training the body to compensate for OI does not work for us - or rather, it might work in the short term and then cause a crash due to the extra strain.Sleep with your head elevated if you experience OI