Thursday 29 December 2011

The 5 projects being funded by the MRCs 1.5 m

Identifying the biological fingerprints of fatigue;
Principal investigator: Dr Wan Ng
Institution: Newcastle University
Summary: Researchers will analyse the immune systems of more than 500 patients with primary Sjögren syndrome – a chronic condition with similar symptoms to CFS/ME, including intense fatigue. Scientists will look for immune system abnormalities in these patients to help them identify the biological "fingerprints" of fatigue. It is hoped this will improve their understanding of the mechanisms of fatigue with a view to developing new treatments. It also offers the hope of a clinical test for the diagnosis of CFS/ME.
Understanding the pathogenesis of autonomic dysfunction in chronic
fatigue syndrome and its relationship with cognitive impairment
;
Principal investigator: Professor Julia Newton
Institution: Newcastle University
Summary: Researchers will explore what causes dysfunction of the autonomic nervous system – characterised by dizziness and light-headedness – present in up to 90 per cent of CFS/ME sufferers.
They will use functional magnetic resonance imaging (MRI) to measure changes in blood flow to the brain and how this relates to cognition and nervous system dysfunction. The researchers hope their work will lay the foundations for new diagnostic tools, a better understanding of nervous system abnormalities and the development of targeted treatments aimed at reversing these abnormalities.
Modulation of aberrant mitochondrial function and cytokine production
in skeletal muscle of patients with CFS by supplementary polyphenols;

Principal investigator: Professor Anne McArdle
Institution: University of Liverpool (joint with the University of Leeds )
Summary: Scientists will use a newly-developed technique to study the energy-generating components of muscle cells (mitochondria). Some studies have suggested that mitochondria may be dysfunctional in
CFS/ME, leading to an energy deficit. The scientists hope this will help them learn more about how CFS/ME develops and becomes a chronic condition.
Can enhancing slow wave sleep SWS improve daytime function in patients with CFS?;
Principal investigator: Professor David Nutt
Institution: Imperial College London (where as it happens my brother is studying)
Summary: Researchers will study sleep disturbance – a core symptom of CFS/ME. Experts in CFS/ME, sleep and psychopharmacology will use a drug to increase deep restorative sleep in CFS/ME patients and measure the effect on their brain function during waking hours. It is hoped the research will increase their understanding of how sleep disturbance affects CFS/ME sufferers, with a view to developing new therapies.
Persistent fatigue induced by interferon-alpha: a new immunological
model for chronic fatigue syndrome;

Principal investigator: Dr Carmine Pariante
Institution: King's College London
Summary: Researchers will examine the effects of a protein called interferon-alpha (IFN-alpha) on the immune system. IFN-alpha is produced as a protective response to viral infection and is commonly
used to treat infections such as hepatitis C. IFN-alpha also induces fatigue and flu-like symptoms in patients, similar to that experienced by patients with CFS/ME. The team will follow patients undergoing IFN-alpha treatment for Hepatitis C over a number of months to define the biological changes that occur in relation to the development of fatigue. Their work could lead to a check-list of blood measures to predict who will develop CFS/ME, as well as identifying new targets for therapy.

Although I have become sceptical of any research funded by governments, companies and the like because they always seem to skew research to fit their own policies + especially pockets, these projects do sound hopeful. Especially the Mitochondria one for me of course. Also the one on sleep as I struggle with that symptom terribly.

Just so long as they include Classic ME sufferers, not solely people with idiopathic fatugie, things seem encouraging

Sunday 4 December 2011

Reflections on recovery

I have been doing Dr Myhills protocol of supplements,  sprays and detoxing for a couple of months now. I think it might be making a small difference but I feel stuck. After years of peuseudo recoveries + relapses, I'm scared to try and improve. I also don't feel I know how to though I have lots of plans for when I'm better.
My symptoms are currently; wind, hypersensitive to light + sound, little appetite, tiredness after exertion, headaches occasionly, insommnia occasionly, muscle weakness

A typical day;

  • 7:20 Look at book/mag, cuddle Herbert, check E-mails, drink
  • Rest for 30-40 min
  • Breakfast while listening to music/story
  • Rest for 30-40 min
  • Get up with help
  • Yoga rest for 40-50 min
  • Crochet, Watch fish/birds, Cuddle Herbert
  • Lunch while listen
  • Rest for 3 hours
  • Drink, exercises, Computer/tv, Cuddle Herbert, listen
  • Tea
  • Listen untill bedtime at 8:15

I have a physio that cones on Weds

So what I want to know is; How long did it take you for the protocol to take affect? How did you manage to get better?

I appriciate its difficult to advise me as I haven't told you my particular problems yet but I'll try to scan + copy the letter ASAP