Journal of IiME Volume 1 Issue 2 www.investinme.org COMPREHENSIVE TREATMENTS of CFS/ME WITH IVIG (continued) In CFS/ME patients, 88% of patients showed GFR below 80ml/min (compared with non-diabetic general populations: 39%), 46% of CFS/ME patients showed GFR below 60ml/min (compared with 19% of general nondiabetic population). Due to the low GFR nearly all of CFS/ME patients we need to be careful to monitor their renal function on a regular basis (every 3 months to check s-creatinine). Method of follow up of patients 1. Check quality of sleep: dreams, DIMS, snoring with apnea, refreshing sleep. 2. Check BP: each time of visit, manually checking BP and record correctly. patient’s fatigue sx is getting better. If BP is still low with hydration of 2 litres of water with 2 tsp of salts, then add florinef. 3. Nocturia: check how frequently patients experience nocturia. If nocturia reduces, then patient’s sx of CFS/ME improves. 5. DIMS (difficulties in initiating and maintaining sleep). If DIMS diminishes then the patient’s sx improves. 6. Strict control of exercise and activity. No heavy lifting (anything using upper extremities such as house cleaning is prohibited). Walking is allowed if patient improves. If patient feels post-exertional malaise then reduce the amount of exercise. 7. Check GFR in all CFS/ME patients (nearly 50% of CFS/ME patient’s GFR is close to chronic kidney disease range (near GFR of 60 ml/min). 8. Avoid the use of NSAID and contrast media using tests such as CT or IVP. 8. Hunger discomfort (such as sudden weakness, sweating) indicates the patient’s liver is enlarged. That means that the patient’s activity level is too high or the patient’s level of exercise is too great. 10. Check liver and spleen at each consultation. If the liver and (or) spleen became smaller then the patient sx improves. If a patient’s liver and (or) spleen are enlarged that means patient’s activity level is too high or patient’s diet control is poor. If BP is rising from low BP, then ME Patient’s Carer’s Story Some time around May or June I got a letter from social services asking me to contact them. In my innocence I thought it was a follow up to our claim for DLA (Disability Living Allowance), so from the disability team offering support. Not a bit of it, my sister had reported me for suspected Munchausen's by Proxy. The fact that she hadn't seen us for two years hadn't held her back. So to add to the difficulties of dealing with the school, the benefits system, a paediatrician from hell and a sick child, I now had to deal with a social services investigation. - Parents of Emma Facts About ME The UK Medical Research Council has a secret file on Myalgic Encephalomyelitis (ME) that contains records and correspondence since at least 1988; The file is held in the UK Government Archive at Kew and cannot be opened until 2023. ME Petition to the Prime Minister The E-petition to the Prime Minister, created by Konstanze Allsopp, to enforce the acceptance of ME as a neurological illness is still open for new signatures. In fact this petition (at http://www.investinme.org/E-Petition%202007.htm) has a closing date of January 2008. One can lend support for this petition, which states - "We the undersigned petition the Prime Minister to get the Health Service and medical profession to accept the WHO classification of ME/CFS as an organic neurological disorder and not as a psychosocial syndrome." Invest in ME Charity Nr 1114035 Page 6/72

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