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Treatment for ME/ CFS – Dr Vinod Patel

August 13, 2011 1 comment

ARTICLE EXCERPT POSTED FROM MEPOSITIVE

Read the full article here

“The main treatments that I find useful are as follows, however, it must be pointed out that none or all of these treatments may work in any specific patient and indeed, a lot of the treatments listed below do not work at all in some specific patients. I can definitely conclude that at least 50% of my patients have benefited from the treatments below, either in isolation or with one or more of the other treatments in the list.

  • Pacing; Pacing allows patients to use their energy levels “wisely”. If, for example, I am capable of doing a 45 minute brisk walk during the day, there is absolutely no way that I would not suffer after doing a 2 hour brisk walk. It is therefore particularly important to know the limits of ones physical activity. I have found that a pedometer works in some patients to work out personal limits.
  • Amitriptyline; Low dose Amitriptyline at night often helps with sleep and also reduces night pain.
  • Nortriptyline; Nortriptyline is a treatment that is related to Amitriptyline, however it probably has better efficacy in moderate to severe fibromyalgia. It also allows a better quality sleep at night. Clearly if patients have side-effects such as sedation, it may well be that Nortriptyline or Amitriptyline is only used at night (or not at all).
  • Gabapentin; Gabapentin is very useful, as is Amitriptyline and Nortriptyline, for neuropathic pain. I have also used Gabapentin for myoclonic jerks in patients to good effect.
  • Melatonin; Melatonin is a very interesting agent and is a natural sleep hormone that we all have. Melatonin is very useful in patients with a poor sleep pattern. I normally only use 2 -5mg at night, 4 days a week, so that the patient does not become dependant on Melatonin. In some patients there has been a dramatic improvement. Other drugs such as Zopiclone can also be used to improve sleep.
  • Duloextine; Duloextine is very good for severe neuropathic pain. It also has anti-depressant actions (as do Amitriptyline and Nortriptyline to some extent). This relatively new agent has had a dramatic effect in one or two of my most severely affected patients with neuropathic pain or even very severe fibromyalgia.
  • Testosterone Replacement; Testosterone replacement has been helpful in both men and women to give stamina and often a positive general outlook.This can only be used in patients who have low testosterone levels which have been tested at least twice. In the majority of cases treatment can be given with injections or a gel.
  • Cognitive Behavioural Therapy; Cognitive behavioural therapy also helps many patients, however, its availability is very limited locally.

Treatments are often based around diagnosing specific conditions that can mimic ME/CFS. These include the following:

  • Thyroid disorders: treated with thyroxin or thionamides.
  • Adrenal Insufficiency: treated with low dose steroids.
  • Postural Hypotension treated with fludrocortisone.
  • Low testosterone states as above.
  • Calcium disorders: treated with calcium, vitamin D.
  • Coeliac Disease: treated by eliminating gluten from diet.
  • B12/Folate deficiency: treated by replacement of these vitamins.
  • Pyridoxine supplementation: especially if symptoms relate to periods.
  • Low potassium states: treated by diet and or potassium replacement.
  • Myasthenia Gravis: specific disorder of neuro-muscular junctions.
  • Systemic Lupus Erythematosus: treated by rheumatologists.
  • Reactive Hypoglycaemia: low glucose states treated by diet.
  • Depression and Neuropathic: a rare diagnosis, citalopram useful.
  • Sleep Apnoea: treated specifically with weight loss and special mask.
  • Obesity: carrying extra weight can increase tiredness.
  • Rheumatological Disorders: specific diagnosis and treatment.

It is also important to stop certain drugs that cause tiredness, for example, statins, codeine, Tramadol, other pain killers, cannabis. At this point I would also like to state it is very difficult to give general advice on pacing and I prefer that the majority of our patients are seen by our Occupational Therapist or Physiotherapist for specific personalised advice on pacing after a detailed history on activities of daily living and physical activity patterns is established.”

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Simon Wessely is receiving “Death Threats”

August 1, 2011 2 comments

“Scientists working on chronic fatigue syndrome or ME have received death threats and are being subjected to a campaign of abuse.┬áProfessor Simon Wessely of King’s College London describes the threats that have been made against him.”

Photo Credit: May 12

You can hear the BBC report here.

Wessely makes a deplorable strawman argument – aided and abetted by the interviewer – that ME suffers would “…rather have an incurable disease than a potentially curable [psychiatric] condition” and that they worry if they ascribe the condition to psychiatric causes this would mean they “acknowledge [they were] making all this up”.

I don’t even know where to begin with this.

Wessely talks about how ME sufferers should not close the door to psychiatric treatment, when he himself closed the door to any biological treatment.

He also fails to understand that ME may indeed be “curable” if funds were diverted to looking for biological causes!

In the interview he walks back from “death threats” and talks loosely about “threats of violence”. He also comes across as an insufferable arrogant prick.

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Simon Wessely – Friend or Foe

July 25, 2011 1 comment

Simon Wessely is on the board of the Medical Research Council and claimed for many years that the causes of CFS/ME were all psychological, rather than physical. This meant that many sufferers were unable for years to obtain help for a physical illness.

Dr Wessely finally (recently) admitted a physical component, but still perplexingly says no research is needed into its causes.

He also suggested that Gulf War Syndrome was psychological, rather than physical. The prevailing concensus is now that the syndrome was caused by the cocktail of drugs the ground troops were injected with – against medical advice – before going to war in Kuwait.

This  puts him on the side of the insurance and pharmaceutical companies, who would find it far too expensive if M.E. was declared physical (particularly the drug companies involved with Gulf War Syndrome) as insurance companies only pay for physical illnesses.

He is generally disliked by the M.E. community.

Do you have any thoughts about or experiences with this man?

You can write to Professor Wessely here:

Professor Simon Wessely
Weston Education Centre
Cutcombe Road
London SE5 9RJ